[Senate Report 104-351]
[From the U.S. Government Publishing Office]



                                                       Calendar No. 565
104th Congress                                                   Report
                                 SENATE

 2d Session                                                     104-351
_______________________________________________________________________


 
                 FAMILY PRIVACY PROTECTION ACT OF 1995

                               __________

                              R E P O R T

                                 of the

                   COMMITTEE ON GOVERNMENTAL AFFAIRS
                          UNITED STATES SENATE

                             together with

                     ADDITIONAL AND MINORITY VIEWS

                              to accompany

                               H.R. 1271

                TO PROVIDE PROTECTION FOR FAMILY PRIVACY




                 August 2, 1996.--Ordered to be printed


                   COMMITTEE ON GOVERNMENTAL AFFAIRS

   TED STEVENS, Alaska, Chairman
JOHN GLENN, Ohio                     WILLIAM V. ROTH, Jr., Delaware
SAM NUNN, Georgia                    WILLIAM S. COHEN, Maine
CARL LEVIN, Michigan                 FRED THOMPSON, Tennessee
DAVID PRYOR, Arkansas                PETE V. DOMENICI, New Mexico
JOSEPH I. LIEBERMAN, Connecticut     THAD COCHRAN, Mississippi
DANIEL K. AKAKA, Hawaii              JOHN McCAIN, Arizona
BYRON L. DORGAN, North Dakota        BOB SMITH, New Hampshire
    Albert L. McDermott, Staff 
             Director
  Susanne Marshall, Professional 
               Staff
  Leonard Weiss, Minority Staff 
             Director
  Michal Sue Prosser, Chief Clerk


                                                       Calendar No. 565
104th Congress                                                   Report
                                 SENATE

 2d Session                                                     104-351
_______________________________________________________________________


                 FAMILY PRIVACY PROTECTION ACT OF 1995

                                _______
                                

                 August 2, 1996.--Ordered to be printed

_______________________________________________________________________


Mr. Stevens, from the Committee on Governmental Affairs, submitted the 
                               following

                              R E P O R T

                        [To accompany H.R. 1271]

    The Committee on Governmental Affairs, to which was 
referred the act to provide protection for family privacy, 
having considered the same, reports favorably thereon without 
amendment and recommends that the bill do pass.

                                CONTENTS

                                                                   Page
  I. Summary and Purpose..............................................1
 II. Background and Need for Legislation..............................2
III. Legislative History..............................................3
 IV. Section-by-Section Analysis......................................7
  V. CBO Cost Estimate................................................8
 VI. Regulatory Impact...............................................10
VII. Additional Views of Senator Cohen...............................11
VIII.Minority Views of Senators Glenn, Levin, Pryor, Lieberman, and 
     Akaka...........................................................13
 IX. Changes in Existing Law.........................................26

                         i. summary and purpose

    The Family Privacy Protection Act requires that a parent or 
guardian give written consent prior to a minor child 
participating in a survey or questionnaire that solicits 
responses on topics of a sensitive, personal nature when that 
survey or questionnaire is funded in whole or in part by the 
Federal government. There are seven specific topics identified 
for privacy: (1) parental political affiliations or beliefs, 
(2) mental or psychological problems, (3) sexual behavior or 
attitudes, (4) illegal, antisocial, or self-incriminating 
behavior, (5) appraisals of other individuals with whom the 
minor has a familial relationship, (6) relationships that are 
legally recognized as privileged, including those with lawyers, 
physicians, and members of the clergy, and (7) religious 
affiliations or beliefs.
    This legislation will protect the privacy rights of parents 
and families from unwelcome government intrusion, and it 
protects minors from being required to divulge personal and 
sensitive information without prior written consent.

                ii. background and need for legislation

    H.R. 1271 will expand to all federal agencies and programs 
family privacy protections similar to those that currently 
apply to federal education assistance programs.
    Legislation protecting the privacy of minors from Federally 
sponsored questions originated in the General Education 
Provisions Act (GEPA). (Public Law 90-247, January 2, 1968, as 
amended).
    Originally enacted as Title IV of the Elementary and 
Secondary Education Amendments of 1967 (P.L. 90-247), GEPA 
codified Federal education statutes into one document. Since 
1970, most major acts extending Federal education programs' 
authorization for appropriations, have amended GEPA in some 
significant way. Three of those changes were designed to 
enhance the protection of the rights and privacy of parents and 
students.
    The ``Protection of the Rights and Privacy of Parents and 
Students'' was established by Congress when it adopted the Kemp 
amendment, entitled, ``Family Educational Rights and Privacy 
Act of 1974.'' (P.L. 93-380, August 21, 1974). This provision, 
in part, ``required the Secretary of the former Department of 
Health, Education, and Welfare to adopt appropriate regulations 
to protect the rights of privacy of students and their families 
in connection with any surveys or data-gathering activities 
conducted, assisted, or authorized by the Secretary or an 
administrative head of an education agency.'' The law states 
further that, ``No survey or data-gathering activities shall be 
conducted by the Secretary, or an administrative head of an 
education agency under the applicable program, unless such 
activities are authorized by law.'' An applicable program is 
one which receives federal aid.
    The 1974 Kemp amendment also established the ``Protection 
of Pupil Rights'' which required parents of students 
participating in Federally assisted educational ``research or 
experimentation program[s] or project[s]'' be provided access 
to the instructional materials. A ``research or experimentation 
program or project'' was defined as an instructional activity 
using ``new or unproven teaching methods or techniques.''
    In 1978, Congress adopted the Hatch amendment to the 
section entitled, ``Protection of Pupil Rights'' (P.L. 95-561, 
November 1, 1978). This provision prohibited requiring pupils 
to participate in certain forms of testing as part of a 
Federally assisted education program, without the prior written 
consent of the pupil's parent or guardian in the case of a 
minor or prior consent of the pupil if he or she is an adult or 
emancipated minor. The Hatch amendment applied to non-
scholastic examinations set forth as ``psychiatric or 
psychological'' tests or treatments.
    Psychiatric or psychological examination or test is defined 
as ``a method of obtaining information, including a group 
activity, that is not directly related to academic instruction 
and that is designed to elicit information about attitudes, 
habits, traits, opinions, beliefs or feelings.'' Psychiatric or 
psychological treatment is defined as ``an activity involving 
the planned, systematic use of methods or techniques that are 
not directly related to academic instruction and that is 
designed to affect behavioral, emotional, or attitudinal 
characteristics of an individual or group.''
    The statute required that prior written consent of a parent 
or guardian be obtained before a minor was required to submit 
to ``psychiatric examination, testing, or treatment, or 
psychological examination, testing, or treatment, in which the 
primary purpose is to reveal information concerning: (1) 
political affiliations; (2) mental and psychological problems 
potentially embarrassing to the student or his family; (3) sex 
behavior and attitudes; (4) illegal, anti-social, self-
incriminating and demeaning behavior; (5) critical appraisals 
of other individuals with whom respondents have close family 
relationships; (6) legally recognized privileged and analogous 
relationships, such as those with lawyers, physicians, and 
ministers; or (7) income (other than that required by law to 
determine eligibility for participation in a program or for 
receiving financial assistance under such program).''
    The Grassley amendment (P.L. 103-227, Goals 2000, March 31, 
1994) modified the 1978 Hatch provision to broaden the scope of 
the parental consent requirement. The Grassley amendment no 
longer limited the informational requirements on instructional 
materials to research or experimentation programs or projects, 
and it expanded the scope of the parental written consent 
requirement to ``a survey, analysis, or evaluation'' the 
revealed information on the seven privacy topics set forth 
previously in the 1978 Hatch amendment.
    H.R. 1271, the Family Privacy Protection Act of 1995 was 
introduced to expand the parental consent requirements provided 
for in programs under the Department of Education to all 
federal agencies. While a large portion of surveys and 
questionnaires are administered in the school setting, they may 
have originated and been funded through various departments and 
agencies within the Federal government. This legislation is 
needed to apply a uniform standard throughout the Federal 
government for research surveys and questionnaires administered 
to a minor child soliciting responses on certain issues of a 
private and personal nature.

                        iii. legislative history

House of Representatives

    In the House of Representatives, on March 16, 1995, the 
Subcommittee on Government Management, Information, and 
Technology of the Government Reform and Oversight Committee 
held a hearing to solicit comments from interested parties on 
Title IV of H.R. 11, the Family Reinforcement Act. H.R. 1271, 
the Family Privacy Protection Act of 1995 was subsequently 
introduced in the House of Representatives on March 21, 1995. 
It was referred to the Government Reform and Oversight 
Committee. The Committee adopted an amendment in the nature of 
a substitute and ordered the bill, as amended, favorably 
reported by voice vote on March 23, 1995, (H. Rpt. 104-94).
    On April 4, 1995, the House of Representatives passed H.R. 
1271 by recorded vote of 418 yeas and 7 nays after adopting by 
voice vote the committee amendment in the nature of a 
substitute; adopting by a recorded vote of 379 yeas and 46 
nays, an amendment by Representative Souder which required 
parental consent to be ``written'' rather than ``informed'', 
removed the $500 limit on monetary damages that an individual 
can claim, and clarified the exemption for tests intended to 
measure academic performance applied except to the extent that 
questions in such tests would require a minor to reveal 
information on any of the seven sensitive topics; and rejecting 
by recorded vote of 131 yeas and 291 nays, an amendment by 
Representative Dornan which sought to prohibit all surveys or 
questionnaires being administered to minors.
    H.R. 1271 as passed by the House of Representatives was 
received in the Senate and referred to the Senate Committee on 
Governmental Affairs on April 5, 1996.

Senate hearing

    A hearing was held by the Senate Committee on Governmental 
Affairs on November 9, 1995. Testimony was presented by Senator 
Charles Grassley of Iowa; Wad Horn, Ph.D., Director of the 
National Fatherhood Initiative; Art Mathias, President of 
Christian Coalition of Alaska; Robert Knight, Director of 
Cultural Studies for the Family Research Council; Sally Katzen, 
Administrator, Office of Information and Regulatory Affairs, 
Office of Management and Budget; Felice Levine, Ph.D., American 
Sociological Association; and Lloyd Johnston, Ph.D., Program 
Director of the Survey Research Center at the University of 
Michigan; and prepared testimony was submitted for the record 
by Sue Rusche, Executive Director of National Families in 
Action.
    In addition, written testimony was submitted by the U.S. 
Department of Health and Human Services; the U.S. Department of 
Justice; Dr. Linda A. Teplin, Professor, Department of 
Psychiatry, Northwestern University; Thomas Gleaton, Ed.D., the 
President of the Parents' Resource Institute for Drug Education 
(PRIDE); Shirley Igo, President for Legislation, National PTA; 
and the American Academy of Pediatrics.
    Senator Grassley, the sponsor of the 1994 Goals 2000 
amendment requiring prior written parental consent for 
Department of Education surveys and questionnaires, testified 
in support of H.R. 1271. Grassley noted his disappointment with 
the draft regulations issued by the Department of Education to 
implement his amendment. He noted that he ``was extremely 
disappointed in those regulations because . . . they gut the 
intent of the law to protect children and families from privacy 
intrusions without prior written consent.'' Section 6 of H.R. 
1271 exempted the Department of Education in the belief that 
the 1993 amendment had established the written parental consent 
requirement for surveys and questionnaires on privacy topics. 
However, Senator Grassley indicated his support for striking 
that exemption and his strong support for the language 
contained in H.R. 1271. The distinction Senator Grassley was 
making is pivotal in the debate on H.R. 1271. The draft 
regulations required only informed consent rather than written 
consent as stated in the statute. Senator Grassley made his 
views clear in stating: ``It was with deliberate intent that I 
required written parental consent. It is not enough to get 
implied consent. . . . These are adult decisions to make. That 
is why my amendment left the decision specifically and 
deliberately in the hands of parents. Unfortunately, this is 
the biggest flaw with the Department of Education regulations 
on my original amendment. They simply leave the decision in the 
hands of the child. . . . This defeats the intent of my 
amendment.''
    Dr. Horn testified in favor of the legislation. His 
testimony indicated that parents need to be adequately informed 
of the nature of surveys and questionnaires that are given to 
their children. He believes that requiring prior written 
consent is the best way to ensure parents are properly 
notified. Dr. Horn also noted that in his ``experience as a 
researcher that parental consent is fairly easily obtained 
except in cases where the investigation comes into conflict 
with the sensibilities or closely held belief of the parents.'' 
Further, it is precisely when the investigation comes into 
conflict with such belief that parental consent is the most 
important.
    Mr. Mathias provided several examples of events occurring 
in the Alaska school system that parents found objectionable. 
His testimony also cited specific questionnaires and surveys 
that had been brought to his attention by Lorraine Ferrell, a 
member of the Anchorage School Board. Her minor children were 
given the questionnaires without her knowledge or prior 
consent.
    In relation to the Alaska cases cites, Chairman Steven 
noted that in addition to the 1994 Grassley amendment to Goals 
2000, the State of Alaska has a law that prohibits the 
administration of any survey or questionnaire in a public 
school ``that inquires into private family affairs of the 
student not a matter of public record or subject to public 
observation unless written permission is obtained from the 
student's parent or guardian.'' (Emphasis added)
    Mr. Knight testified that parents are the people ``most 
equipped to discern the needs of their children.'' He also 
indicated that the loss of the ability of parents to determine 
their children's education needs is an unacceptable cost to pay 
for surveys and questionnaires. He also noted that repeated 
surveys and questionnaires can desensitize children to 
sensitive issues. ``Through sheer repetition of reference, 
harmful activities can lose their power to inspire natural 
resistance.'' Thus, surveys and questionnaires can lead to the 
behavior that is being investigated.
    Mr. Hilton noted the similarity between the language in 
H.R. 1271 and Utah law. He testified that he believes that 
there should be a uniform consent form for all federally funded 
surveys. As a civil rights attorney, Mr. Hilton provided 
details of litigation on parental rights and various court 
rulings. He urged that the right of private action be made 
stronger.
    Ms. Katzen testified on behalf of the administration in 
opposition to H.R. 1271. She indicated that while the 
administration supports parental involvement with respect to 
research involving children, the administration is opposed to 
the ``written'' consent requirement. She noted that various 
forms of affirmative consent and passive consent consent should 
not be ruled out and referenced the current practices in social 
science research protocols for ``informed'' consent. Ms. Katzen 
also noted the potential negative impact of the written consent 
requirement citing reduced response rates which lead to 
unreliable results. She also pointed out that the information 
collected by these surveys and questionnaires is an important 
policy making tool.
    Dr. Levine testified in favor of alternative forms of 
consent. She noted that ``a face-to-face interview or a 
telephone call might make much more sense or be more 
appropriate when illiteracy rates of parents are high.'' She 
also noted that the bill, by requiring written consent, is 
contrary to Congressional efforts to decrease unnecessary 
paperwork. Dr. Levine also stressed the importance of using the 
results of such surveys and questionnaires in understanding 
high risk behavior such as smoking, drug abuse, and violence.
    Dr. Johnston's testimony explained his objection to an 
absolute written consent requirement. He urged the committee to 
consider alternative methods of achieving consent and made some 
suggestions in providing parents with options to respond when 
informed of a survey or questionnaire when they objected to 
their minor child being included in a study. He also noted the 
importance of the information being collected in these studies.
    Sue Rusche submitted her written statement reflecting the 
need to utilize surveys and questionnaires to combat drug abuse 
and to create effective drug abuse prevention programs.
    In written testimony, Dr. Gleaton noted the experience of 
PRIDE's of surveys in addressing high risk behavior. He 
indicated that the loss of the ability to collect reliable data 
on adolescent drug use would cut off access to understanding 
important health indicators among children.
    Dr. Teplin referred to her research on child psychiatric 
disorders. She indicated in her written testimony that her 
studies identify the psychiatric needs of children in the 
juvenile justice system and are vital to understanding the 
needs of these children and to helping them. She also noted 
that in many cases, parental consent is not only unfeasible but 
unnecessary because there is ``minimal risk'' of harm by 
researchers.
    Shirley Igo submitted written testimony in opposition to 
the Family Privacy Protection Act. She noted alternative 
methods of informing parents and the importance of research for 
all levels of decision making, both parental and scholastic.
    The Department of Health and Human Services and the 
Department of Justice both expressed opposition to the written 
consent requirement stating that it could jeopardize the 
ability of studies to provide Federal, state and local policy 
makers with useful, quality information.

Senate committee vote

    On April 18, 1996, the Committee on Governmental Affairs 
ordered H.R. 1271 favorably reported by a recorded vote of 7 
yeas; Senators Stevens, (Roth by proxy), Cohen, Thompson, 
Cochran, McCain, Smith, and Brown, to 5 nays; Senators Glenn, 
Nunn, Levin, (Pryor by proxy), (Lieberman by proxy), Akaka, and 
Dorgan after rejecting an amendment in the nature of a 
substitute offered by Senator Glenn by a recorded vote of 6 
yeas; Senators Glenn, Levin, (Pryor by proxy), Lieberman, 
Akaka, and Dorgan, to 7 nays; Senators Stevens, (Roth by 
proxy), (Thompson by proxy), (Cochran by proxy), (McCain by 
proxy), Smith, and Brown.

                    iv. section-by-section analysis

Section 1. Short title

    Family Privacy Protection Act of 1995.

Section 2. Family privacy protection

    Section 2(a) establishes a requirement that administrators 
of Federally funded surveys and questionnaires obtain written 
parental consent prior to asking seven kinds of sensitive 
questions. The seven subject areas requiring written parental 
consent are: (1) parental political affiliations or beliefs, 
(2) mental or psychological problems, (3) sexual behavior or 
attitudes, (4) illegal, antisocial, or self-incriminating 
behavior, (5) appraisals of other individuals with whom the 
minor has a familial relationship, (6) relationships that are 
legally recognized as privileged, including those with lawyers, 
physicians, and members of the clergy, and (7) religious 
affiliations or beliefs.
    Section 2(b) creates general exceptions to this policy. The 
exceptions include the seeking of information for the purpose 
of a criminal investigation or adjudication, a good faith 
inquiry into the health, safety, or welfare of an individual 
minor, the seeking of information required by law to determine 
eligibility for participation in a program or for receiving 
financial assistance, and for purposes of administration of the 
immigration, internal revenue, or customs laws of the United 
States.
    Section 2(c) excludes any test intended to measure academic 
performance, unless the test includes questions in any of the 
seven sensitive subject areas.

Section 3. Notification procedures

    Section 3 requires the head of any Federal agency or 
department conducting a survey or questionnaire involving 
minors to establish procedures for the department or agency to 
notify minors and their parents of the protections of this act. 
The procedures shall also provide for advance public 
availability of each questionnaire or survey to which a 
response from a minor is sought.

Section 4. Compliance

    This section requires the head of each Federal department 
or agency to establish such procedures as are necessary to 
ensure compliance with the Act.
    This section also provides that the Act should not be 
construed to foreclose any individual from obtaining judicial 
relief otherwise available.

Section 5. Minor defined

    The terms ``minor'' and ``emancipated minor'' will be 
defined under the laws of the State in which the individual 
resides.

Section 6. Application

    Section 6 exempts programs and activities which are subject 
to the General Education Provisions Act (20 U.S.C. 1221 et 
seq.). This section effectively removes the Department of 
Education from the Family Privacy Protection Act. The General 
Education Provisions Act, as amended by Senator Grassley in 
1994 as discussed above, was thought to have provided for a 
written parental consent requirement for the participation of 
minors in surveys and questionnaires on privacy matters.

Section 7. Effective date

    The Act shall take effect 90 days after being signed into 
law. The Act applies to grantees of departments and agencies on 
that date, not just future recipients of Federal funds.

                          v. cbo cost estimate

                                     U.S. Congress,
                               Congressional Budget Office,
                                       Washington, DC, May 2, 1996.
Hon. Ted Stevens,
Chairman, Committee on Governmental Affairs,
U.S. Senate, Washington, DC.
    Dear Mr. Chairman: The Congressional Budget Office has 
reviewed H.R. 1271, the Family Privacy Protection Act of 1995, 
as ordered reported by the Senate Committee on Governmental 
Affairs on April 18, 1996. CBO estimates that H.R. 1271 would 
result in increased costs of between $2 million and $3 million 
a year in most years to administer certain federally funded 
surveys, assuming appropriation of the necessary funds. The act 
would not affect direct spending or receipts; therefore, pay-
as-you-go procedures would not apply.
    Bill purpose: H.R. 1271 would require that administrators 
of certain surveys or questionnaires obtain written parental 
consent prior to surveying a minor on certain topics, such as 
parental political affiliation, sexual behavior, and illegal 
activities. The act would apply to surveys or questionnaires 
that are part of a program or activity funded in whole or in 
part by the federal government. The act's provisions are 
similar to those contained in the Goals 2000: Educate America 
Act (Public Law 103-227), which requires written parental 
consent for surveys funded through the Department of Education.
    Federal budgetary impact: Based on information provided by 
federal agencies and by private researchers, CBO estimates that 
enacting this legislation would increase--in some cases, 
dramatically increase--the costs to conduct federal surveys of 
minors.
    The Federal Regulations for the Protection of Human 
Subjects (45 CFR part 46) currently require that federal 
studies obtain informed parental consent. In many cases, this 
involves the use of a passive written consent process--that is, 
parents can object to their child's inclusion in a survey by 
returning a form of disapproval. H.R. 1271 would change this to 
require written parental consent.
    According to a study by the Rand Corporation, a written 
consent requirement could increase the cost of acquiring 
consent (not the cost of the whole survey) by more than 15-fold 
to maintain a comparable response rate. The study found that 
only 40 percent of the individuals sampled responded to the 
initial consent form, with 60 percent requiring telephone 
follow-ups. As a whole, the costs to obtain written consent 
were 15 times greater than that for passive consent, and still 
yielded a lower response rate (86 percent as compared with 93 
percent). The Survey Research Center at the University of 
Michigan, which conducts the Department of Health and Human 
Services' (DHHS) teen drug-use surveys, indicated that if this 
ratio were applied to a school-based survey of 50,000 students 
that it conducted last year, the written consent requirement 
would have added $0.75 million to the $4 million cost of the 
study--a 20 percent increase. For the data collection effort, 
which alone cost $1.6 million, written consent would have 
increased the costs by nearly 50 percent.
    In sum, CBO expects that the requirement of written 
parental consent could add nearly 50 percent to the data 
collection costs of some surveys directed at respondents under 
the age of 18. At DDHS, surveys of minors are conducted by the 
Centers for Disease Control (CDC), the Substance Abuse and 
Mental Health Services Administration (SAMSHA), the National 
Institute for Child Health and Human Development (NICHD), and 
other agencies. SAMSHA, for example, conducts a survey with an 
average cost of about $7.5 million of which about $5 million is 
for collecting data. About one-quarter of the respondents are 
minors. Using the estimates from the University of Michigan, 
written consent would add up to $0.6 million annually to the 
cost of this survey. Likewise, the Bureau of the Census has 
estimated that a written consent requirement would add about $2 
per interview to the National Crime Victimization Survey--an 
in-person survey--or about $140,000 in total.
    Thus, depending on the survey administered in any 
particular year, CBO estimates that requiring written consent 
would add between $2 million and $3 million annually to the 
costs of federally funded surveys.
    Impact on State, local, and tribal governments: H.R. 1271 
contains no intergovernmental mandates as defined by Public Law 
104-4. State, local, or tribal governments are likely to face 
additional costs to administer certain programs or activities 
that are funded in part by the federal government. Such costs, 
however, would result from conditions of federal financial 
assistance and not from mandates as defined by the law.
    Impact on the private sector: The legislation would impose 
no new private sector mandates, as defined by Public Law 104-4. 
All provisions within H.R. 1271 that might impose requirements 
on the private sector would be considered a condition of 
federal assistance.
    Previous CBO estimate: On March 28, 1995, CBO provided a 
cost estimate for H.R. 1271, as ordered reported by the House 
Committee on Government Reform and Oversight on March 23, 1995. 
CBO estimated that the House-reported bill would have no 
significant impact on the federal budget because that bill 
would not change the current requirement that agencies obtain 
``passive'' parental consent. This version of the bill would 
impose a stricter consent process, as did the House-passed 
version.
    If you wish further details on this estimate, we will be 
pleased to provide them. The CBO staff contacts are Paul 
Cullinan, and John R. Righter.
            Sincerely,
                                         June E. O'Neill, Director.

                         vi. regulatory impact

    Paragraph 11(b)(l) of rule XXVI of the Standing Rules of 
the Senate requires that each report accompanying a bill 
evaluate ``the regulatory impact which would be incurred in 
carrying out the bill.''
    The enactment of this legislation would not have a 
significant regulatory impact on the public, nor would it 
constitute an undue regulatory burden on the departments or 
agencies. The Department of Education has had similar 
regulations since 1978. In addition, most other departments and 
agencies have adopted the regulations and practices of the 
Department of Health and Human Services covering research 
surveys and questionnaires. Existing regulations require 
written parental consent for minors prior to their 
participation in research surveys and questionnaires, but also 
contain certain waivers of this requirement. H.R. 1271 would 
eliminate the waivers.
                 vii. additional views of senator cohen

    The Family Privacy Protection Act has a worthy goal--to 
ensure that parental consent is obtained before minors may 
participate in federally funded research projects that touch 
upon sensitive, private matters. This bill passed the House by 
a 379-46 vote last year and, in 1994, similar legislation 
relating to research funded by the Department of Education 
passed the Senate 93-0. It is a topic deserving of 
consideration by the full Senate.
    Nonetheless, I am concerned that the legislation in its 
current form may hinder important research on drug and alcohol 
addiction, juvenile delinquency, teenage pregnancy, child 
abuse, smoking by minors, and the spread of communicable 
diseases. The problematic aspect of the legislation is its 
inflexible requirement that written parental consent must be 
obtained before any minor may participate in a research project 
addressing any one of seven enumerated ``sensitive'' topics. 
This requirement will have two effects on federally funded 
surveys and questionnaires. First, it will substantially 
increase the cost of research projects. More importantly, 
however, it will undermine the reliability of research into 
youth behavior by lowering participation rates and biasing the 
sample set of research subjects. One national study 
demonstrated that 50% of parents failed to respond to a request 
for written consent, although follow-up phone calls indicated 
that only 1% of the parents objected to their child's 
participation. Moreover, the written consent requirement is 
likely to skew survey results because children from 
dysfunctional families are far less likely to obtain consent to 
participate in a survey than children from functional families. 
Without reliable data on critical issues of our day such as 
juvenile crime, substance abuse, and teenage pregnancy, I fear 
that efforts to address these problems will be compromised.
    Supporters of H.R. 1271 do not refute that requiring 
written consent will degrade important research efforts, but 
argue that the privacy interests of parents outweigh any 
incidental impacts the legislation might have. I do not concur. 
It is important to keep in mind that even under current law, 
federal researchers must obtain some form of parental consent 
before conducting a survey of minors. The manner in which 
consent must be objected is determined by ``institutional 
review boards,'' which are comprised of scholars and community 
representatives from the university or organization conducting 
the research. In some instances a board will require written 
consent, but it may also determine that parental rights are 
sufficiently protected if parents are notified about the 
subject matter of a survey and informed that they have a right 
to prohibit their child from participating (otherwise known as 
``informed consent''). Through the institutional review board 
process, the level of consent can be calibrated to the 
sensitivity of the survey at issue. If the current 
institutional review board process is not providing sufficient 
protection to parental rights, perhaps legislative changes 
should be made to ensure that institutional review boards give 
greater weight to parental concerns. But regardless of whether 
changes to the current system are in order, in my view, the 
incremental enhancement of parental rights that would be 
obtained by requiring written consent for all surveys, as 
opposed to a more flexible system that only requires written 
consent when necessary, is not worth the detrimental effects 
that this legislation will have on important research into 
youth behavior.
    To be sure, informed consent is not perfect. In a limited 
number of instances, parents will not receive the notices the 
researchers send to them and may be upset that their children 
participated in surveys without their prior knowledge. One way 
to minimize the frequency that this occurs would be to increase 
the role of school administrators and other local officials in 
reviewing surveys involving minors. We may want to consider 
legislation mandating that local officials have the opportunity 
to review surveys and prohibit the children for which they are 
responsible from participating if they do not approve the types 
of questions that are being asked. In this way, local officials 
accountable to the community can serve as surrogates for 
parents by ensuring that any materials distributed to children 
conform with community standards. Those who run the schools or 
other youth-oriented institutions make dozens of decisions on a 
day-to-day basis, without the written consent of parents, that 
have far more important effects on children than do surveys and 
questionnaires. Certainly, administrators with responsibility 
for hiring teachers, developing curriculum, establishing school 
safety policies, and imposing discipline can also be entrusted 
to decide whether the content of a survey is consistent with 
community norms. The combination of notice to parents plus 
review by school or other administrative officials should be 
sufficient to protect parents' legitimate concern that their 
children not be exposed to inappropriate research materials.
    Although I believe this set of policies will provide 
sufficient protection to parents, federal law should be 
sufficiently flexible to allow states and localities to set 
more stringent consent standards. If any state decides that 
children should not be surveyed without written parental 
consent, then federally funded researchers choosing to work in 
that state should be required to abide by state law. It would 
be a mistake, however, to create a federal mandate that applies 
the most stringent state law to the entire country, which is 
what the legislation reported by the Committee would do.
    In light of the debate that took place on this legislation 
in the Governmental Affairs Committee, it appears that all 
members share the goals of empowering parents while maintaining 
local autonomy. I am hopeful that legislation acceptable to a 
broad majority of the Senate can be crafted as this bill moves 
to the floor.

                                                        Bill Cohen.
                                SUMMARY

 viii. minority views of senators glenn, levin, pryor, lieberman, and 
                                 akaka

    We strongly oppose H.R. 1271 for the following reasons:
    1. It is unnecessary. It seeks to fix a problem that simply 
does not exist.
    2. It would seriously impair research and evaluation 
crucial to identifying and addressing life-threatening problems 
facing America's children.
    3. It would create an unnecessary layer of Federal 
regulation that would burden local schools and communities at a 
time when we are asking them to do more with less.
    4. Its broad and uncertain scope would impose significant 
burdens on local schools and communities, lead to increased 
litigation, and hurt, not help the health and safety of our 
nation's children.
    While the stated goals of H.R. 1271 are to protect children 
and strengthen the family, what it would really do is cripple 
our ability to respond to the problems that confront families 
and their children every day. It would make reliable research 
and evaluation too expensive, and it would create a mountain of 
unnecessary paperwork along the way.
    H.R. 1271 is opposed by doctors and nurses, health and 
social science researchers, teachers, counselors, State public 
health officials, community groups, and parents. Over two dozen 
national organizations dedicated to the health, safety, and 
well-being of America's children have written the Committee 
opposing H.R. 1271. Here are some comments these organizations 
have made about the effects that H.R. 1271 will have on 
children.
          From the American Academy of Pediatrics, an 
        organization of 50,000 pediatricians: ``This 
        legislation is yet another case of style over 
        substance, with a title that is deceiving to the 
        public. *  *  * Parental consent should be the 
        standard, but written mandates go too far. A code of 
        ethics already exists for research surveys, including 
        the rights of adults and minors to refuse 
        participation.''
          From the National PTA: ``H.R. 1271 is too extreme and 
        would hamper the ability of researchers to provide 
        reliable and valid data that not only Congress, but 
        organizations such as the National PTA, heavily rely on 
        to take positions and urge various statutory and 
        regulatory measures.''
          From the Association of State and Territorial Health 
        Officials: ``State public health officials agree that 
        children should not be surveyed without parents' 
        knowledge. However, this permission is already 
        obtained. Further requirements are unnecessary and will 
        ruin the random methodology of a survey.''
          From the American Sociological Association: ``H.R. 
        1271 ostensibly enhances parental involvement and 
        control over questions or information directed to a 
        minor, but the bill actually undermines critical 
        research on youth health behaviors and provides no 
        significant additional protection to the privacy of 
        families. Ironically, while this bill purports to help 
        parents, it is more likely to harm their interests by 
        jeopardizing their access to essential and valid 
        information on high risk health behaviors such as drug 
        and alcohol use, tobacco use, violence, and the like.''
    Other opponents of the bill include the National Council on 
Alcoholism and Drug Dependence, the America Public Health 
Association, the Community Anti-Drug Coalitions of America, 
Partnership for a Drug-Free America, National Families in 
Action, the Child Welfare League of America, and dozens of 
America's top experts in child and adolescent research.
    The Department of Justice, the Department of Health and 
Human Services, and the Office of Management and Budget also 
oppose the bill. In a November 14, 1995, letter to the 
Committee, Andrew Fois, Assistant Attorney General, U.S. 
Department of Justice, stated:

          Many issues from drug abuse to child abuse have been 
        informed by studies that will no longer be feasible or 
        representative if H.R. 1271 is enacted in its current 
        form. Requiring prior written parental consent is 
        likely to exclude minors who are in trouble with the 
        law or abused at home from studies because parents are 
        not available or willing to provide that consent. 
        Impeding the collection of critical information about 
        the problems affecting children is damaging. Policy 
        makers and law enforcement officials need accurate 
        information about trends affecting children in order to 
        mount appropriate responses to protect child victims 
        and punish young criminals.

    The Secretary of Health and Human Services, Donna Shalala, 
wrote to the Committee on April 7, 1996, and said:

          The requirement that parental consent be in writing, 
        and in advance, could seriously jeopardize the ability 
        of these studies to provide Federal, State and local 
        policy makers with useful and reliable information. 
        Further, in programs such as those serving runaway 
        youths, the requirement for written consent, prior to 
        otherwise, may be logistically impossible to meet or 
        may even be incompatible with the best interests of the 
        children receiving services.

                        H.R. 1271 Is Unnecessary

    Existing Federal regulations provide ample protection for 
children participating in Federally-sponsored survey research. 
Through these regulations, a reliable and sophisticated system 
for obtaining informed parental consent for children 
participating in survey research has been created. The 
requirement of across-the-board written consent imposed by H.R. 
1271 undermines the current system, which satisfactorily 
addresses the diverse needs of individual communities by 
allowing for local flexibility in the choice of consent 
procedures while providing strong safeguards for children who 
participate in survey research. In short, H.R. 1271 is a 
solution in search of a problem.
    In 1991, seventeen Federal agencies, which together sponsor 
the vast majority of Federal research involving children, 
adopted a common set of regulations, 45 CFR, Part 46, Subpart 
A, to protect research participants. These regulations require 
that researchers obtain informed consent from parents whose 
children will participate in survey research. Procedures for 
obtaining informed consent must be carefully scrutinized and 
approved by a local review committee, an Institutional Review 
Board (IRB), whose sole purpose is to protect human research 
subjects.
    In order to ensure that consent procedures accurately 
reflect the level of risk to children, the Federal regulations 
require a case-by-case evaluation of proposed surveys. In 
instances where there is sufficient risk, the regulations 
require written parental consent. However, in cases where an 
IRB concludes that the research poses ``less than minimal risk 
of harm'' to children, an alternative consent procedure may be 
used instead.
    This does not mean that researchers do not have to obtain 
informed parental consent, but rather that the consent 
procedures used can be less stringent than written consent. 
Examples of alternative consent procedures include oral 
consent, where a parent must give affirmative consent over the 
phone or in person, and implied (or passive) consent, where 
researchers send a first-class mailing to parents describing 
the research and give the parents an opportunity to decline 
participation, either orally or in writing. In the latter case, 
if parents do not decline participation, it is assumed that 
they consent to their child's participation.
    If mechanisms outlined in a research proposal for obtaining 
informed parental consent are insufficient, an IRB will 
disapprove the research project or require that the consent 
procedure be strengthened to reflect more adequately the degree 
of risk involved. Institutional officials, such as school 
administrators, may also disapprove research proposals and 
decline participation in any survey if they disagree with the 
protections provided for children. They are also barred from 
approving any survey that has not received IRB approval.
    By law, IRBs must be broadly representative. They must 
consist of at least five members and must include at least one 
scientist, one non-scientist, and one person who is not 
affiliated with the institution conducting the research. On the 
Federal level, IRBs are governed by the Office for Protection 
From Research Risks at the National Institutes of Health, which 
provides guidance on research conduct and investigates claims 
of inappropriate research practices.
    The current Federal regulations do not preempt state or 
local laws that would require more stringent consent procedures 
than those approved by a relevant IRB. Under 45 CFR 46.101(f), 
the Federal regulations state that ``this policy does not 
affect any state or local laws or regulations which may 
otherwise be applicable and which provide additional 
protections for human subjects.'' For example, if an IRB 
approved an oral consent procedure for obtaining informed 
consent, a state or locality would be free to impose a more 
demanding consent standard, such as written consent. The only 
instance where Federal regulations would override state or 
local authority would be if the state or locality established a 
less stringent consent requirement than that mandated by the 
Federal policy.
    By imposing a rigid across-the-board requirement for 
written consent, H.R. 1271 would eliminate any possibility of 
using an alternative consent procedure in cases where research 
poses little or no risk to children. This one-size-fits-all 
approach does not take into account the differing needs of 
individuals and communities that will participate in and 
benefit from survey research. It would also destroy the 
flexibility permitted by the Federal regulations that ensure 
efficient research while safeguarding children. A number of 
ongoing Federal surveys that explore such issues as drug and 
alcohol use and child violence have been carefully designed to 
minimize risk to children and use lower cost parental consent 
procedures.
    At the hearing on H.R. 1271 on November 9, 1995, proponents 
of the bill failed to provide examples of problems with Federal 
surveys or consent procedures that would be addressed by 
imposing the rigid written consent requirement of this bill. In 
fact, the only example using a Federal survey was one in which 
a Utah school tested a child after written consent had been 
given and then rescinded. In this case, the problem was not the 
parental consent process, but rather subsequent follow-through 
by the school. This local school enforcement problem is not 
addressed by H.R. 1271.

                   Hurting Research, Hurting Children

    If we are to develop viable solutions to the host of 
problems that confront our children and their families today, 
we must continue to collect meaningful data on the behaviors 
and attitudes of children and adolescents. Parents, educators, 
counselors, researchers, and policy-makers all require access 
to reliable information about young people in order to craft 
sound responses to a growing array of social ills that affect 
our children every day, such as adolescent drug and alcohol 
abuse, youth violence, and the spread of AIDS.
    At the local community level, doctors, teachers, school 
nurses, drug treatment counselors all depend on survey data to 
learn about emerging problems and evaluate the effectiveness of 
ongoing programs:
          Thomas L. Conlan, Jr., a member of the Board of 
        Directors for Hamilton County, Ohio, Alcohol and Drug 
        Addiction Services (ADAS) expressed his concern about 
        H.R. 1271, stating ``We depend on information obtained 
        from federally funded surveys to help measure the 
        effectiveness of our drug and alcohol prevention 
        programs.''
          According to Evelyn Martinez, Executive Director of 
        the Los Angeles Alliance for a Drug Free Community: 
        ``Over the past two decades, survey data on youth 
        substance use and abuse have served as an early warning 
        system for parents, families and communities, allowing 
        us to target our prevention efforts where they are 
        needed most as well as to measure program outcomes 
        fairly.''
          The Wood County Partnership Council of Marshfield, 
        Wisconsin, reports that it relied on survey data to 
        prioritize planning and help develop effective 
        strategies that have significantly lowered the number 
        of teens who drive after drinking. One important effort 
        was ``prevention training for over 1,000 adults, 
        including school personnel, clergy, parents and 
        grandparents, who then develop prevention action plans 
        for their communities.''
          ``Abuse and neglect and other `potentially 
        embarrassing' family problems often constitute the 
        reasons that youth run away from home [said the HHS 
        Administration for Children and Families]. Obtaining 
        information about these problems is critical in order 
        for service providers to address these problems and to 
        facilitate a youth's return home or placement in an 
        alternative living arrangement.''
    At the other end of the process, Congress routinely uses 
survey research data to set Federal policy in a number of areas 
that affect children and families. For example, a 22-year 
ongoing school-based survey called Monitoring the Future, run 
by the University of Michigan's Institute for Social Research, 
has alerted Congress time and again to changing trends in 
adolescent drug use and has been instrumental in guiding 
national drug prevention efforts.
          In the late 70's, Monitoring the Future called 
        attention to the sharp rise in daily marijuana use 
        among young people, leading to more Federal research on 
        the consequences of marijuana use.
          In the late 80's, it helped spotlight and quantify 
        the levels of cocaine and crack use, leading to a 
        Federal media campaign aimed at communicating the 
        dangers of these drugs.
          In the early 90's, the study identified the sharp 
        increase in inhalant use among young teenagers, leading 
        to a full-scale media ad campaign against inhalants.
          The survey has been used in all White House National 
        Drug Control Strategy documents since the creation of 
        the drug czar's office in the 80's.
    The Monitoring the Future survey and others like it 
continue to assist Congress in crafting national drug 
prevention policies. Indeed over the last several months, 
several Senators have referred to the results of these studies 
on the Senate floor in debate on Federal drug policy.
    In a statement about youth drug use, Senator Kyl noted 
that, ``the University of Michigan's Institute for Social 
Research [the Monitoring the Future Survey] found that, after a 
decade of steady decline, drug use by students in grades 8, 10, 
and 12 rose in 1993.''
    During the same debate, Senator Abraham pointed out that, 
``according to the 1994 `Monitoring the Future' study, drug use 
in three separate categories--used over lifetime, use in past 
year, use in past month--has shown a remarkable surge during 
the last 2 years, for young people in particular.''
    In the following excerpt from a speech on drug smuggling, 
former Senate Majority Leader Dole cited statistics from 
several drug surveys, including Monitoring the Future, the 
National Household Survey on Drug Abuse, and the Youth Risk 
Behaviors Study.

          I will point out a few statistics. These are not 
        Senator Dole's facts. These are facts given to use by 
        people who are experts in the area [of adolescent drug 
        use]. The number of young people between 12 and 17 
        using marijuana has increased from 1.6 million in 1992 
        to 2.9 million in 1994. That has probably increased a 
        lot more since the end of 1994. And the category of 
        ``recent marijuana use'' has increased a staggering 200 
        percent among 14- to 15-year-olds. About one in three 
        high school students uses marijuana, and 12- to 17-
        year-olds who use marijuana are 85 percent more likely 
        to graduate to cocaine than those who abstain from 
        marijuana. Juveniles who reach age 21 without ever 
        having used drugs almost never try them later in life. 
        If you make the first 21 years without using drugs, 
        then you are probably not going to be addicted.

    These statements underscore the value to Congress of sound 
information on adolescent behaviors. In order to conduct 
enlightened debate and develop effective policies to address 
the problems facing our young people and their families, as 
well as apply effective strategies at the community level, we 
must preserve our ability to collect and analyze reliable data.
    If enacted, H.R. 1271 would devastate the quality of survey 
research that provides valuable insights into the lives of our 
young people. While requiring written parental consent in all 
cases may sound innocuous, it is not. Such a requirement would 
lower response rates dramatically and thereby render useless 
most, if not all, of the data obtained from a given survey. 
Moreover, because of the extensive paperwork and follow-up 
efforts that would be needed to achieve high response rates, 
the costs of research would skyrocket, making it likely that 
many important research projects would not be funded.
    Dr. Johnston, Director of the Monitoring the Future Survey 
at the University of Michigan, described how H.R. 1271's 
written consent requirements sounds reasonable until one takes 
into account that:

          Requiring researchers to secure written parental 
        permission in advance makes one survey into two 
        surveys, because parents must first be surveyed to 
        obtain their written permission, and only then can the 
        students be surveyed. This might be acceptable, 
        assuming that the substantially greater costs to the 
        government were tolerable, were it not for the fact 
        that the non-response rates from parents are 
        debilitatingly high. I say debilitatingly, because the 
        resultant response rates for the young people would be 
        so low in most cases as to render the data useless at 
        worst, highly misleading at best. * * * In sum, the 
        introduction of a written parental consent 
        requirement--as contrasted to advance notification and 
        description with a convenient method for the parent to 
        decline--will result in virtually unusable data from 
        practically all in-school and phone surveys of youth.

    The detrimental effects of written parental consent on 
response rates are well-documented. When passive consent 
procedures are used, one can expect response rates of 90% and 
above. In contrast, when written parental consent is employed, 
response rates drop precipitously, often to around 50% or less. 
When response rates plummet to those levels, survey data 
becomes unreliable and unusable.
    A study by the RAND Corporation comparing active written 
consent versus passive consent estimated that obtaining written 
consent was at least 15 times more expensive than passive 
consent. The author of the study, Phyllis Ellickson, has 
stated:

          A decade ago, it cost $25 per child to get signed 
        forms from most of the parents; now it costs about $45 
        per child. For a large-scale study involving 20,000 
        children, the consent process alone could cost nearly a 
        million dollars--probably considerably more if the 
        children come from geographically dispersed areas. And 
        even then, there is no guarantee that the effort will 
        be successful.

    A portion of the Monitoring the Future survey seeks written 
parental consent as part of a home follow-up of students who 
had previously been surveyed at school. Fewer than half (48.7%) 
of the parents returned the consent form in this case. When the 
remainder were contacted by phone, another 35% gave oral 
consent and only 1% declined participation. The balance of 
families could not be located. These results clearly indicate 
that a parent's failure to return a consent form does not 
necessarily indicate an objection to a child's participation, 
and that obtaining affirmative consent requires much effort for 
little apparent benefit.
    This follow-up study tracked four groups of students, 
classified by the likelihood that they would drop out of 
school. The response rate to the initial written consent 
request was approximately 30% lower in the highest risk group 
compared to the lowest risk group, indicating that the written 
consent provision would lead to results that under represent 
the students most at risk. Consistent, with this conclusion, at 
one inner-city school with a high population of at-risk 
students, the written response rate was an abysmal 17%.
    In a similar New York state survey the same results were 
found. One school had to be dropped from the study because only 
20 of 224 signed parental consent forms were returned. Of the 
remaining schools, a comparison was made of those which 
required that written parental consent forms be returned with 
those which required that parents be given advanced 
notification of the study and given the opportunity to decline 
their child's participation.
    The participation rate was 67.8% when written consent forms 
had to be returned, and 95% when just advanced notification was 
provided. In the schools with high risk populations where 
written parental consent forms were required, student 
participation was lowest. Other studies reported in journals 
such as Addictive Behaviors provide further evidence that 
parents of students who are most at-risk are less likely to 
return signed consent forms even though they do not, after 
repeated follow up, object to their child's participation.
    If researchers hope to attain reasonable response rates 
under H.R. 1271, they will have to do extensive mail and phone 
follow-ups, as described in the example above. These additional 
efforts will require tremendous time and resource commitments 
from the participating schools, since schools are prohibited 
from releasing parents' phone numbers and addresses to 
researchers. Therefore, school employees will be forced to 
write follow-up letters or make intrusive follow-up phone calls 
(often several calls per parent). In most cases, researchers 
will have to shoulder the cost burden of follow-up by 
reimbursing schools for labor and materials costs out of 
limited research grants. The result is that the cost of 
reliable research will skyrocket, potentially to the point 
where many valuable projects could not be funded. Dr. Johnston, 
Director of the Monitoring the Future Survey, estimates that 
across-the-board written consent would add approximately 
$500,000 annually to the cost of that survey alone.
    In some cases, local school districts may have to bear the 
brunt of the increased costs associated with research and 
evaluation without reimbursement. For example, in order to 
qualify for Safe and Drug Free School Funds, local schools are 
required to conduct a periodic needs assessment. In the State 
of Michigan, this requirement is met through the Michigan 
Alcohol and Other Drugs School Survey (MAOD), a study that 
provides local information on adolescent drug use. The survey 
is also used to evaluate the effectiveness of local drug 
prevention efforts. Without this survey, many communities in 
Michigan would have no way to gauge the extent of drug use 
among their children. Dr. Thomas Van Valey, Director of the 
MAOD survey, concludes that the added requirements of H.R. 1271 
would ``put the cost of the survey completely out of range for 
many school districts, especially the smaller ones.''
    During the markup of H.R. 1271, Senator Stevens alluded to 
the possibility of allowing for affirmative oral consent rather 
than requiring written consent in all cases. While oral consent 
may elevate response levels marginally compared to the very low 
levels expected under a written consent requirement, it would 
not achieve the response rates necessary for reliable data 
analysis. The intrusive and expensive follow-up efforts 
outlined for the written consent method would also be required 
for affirmative oral consent. Dr. Van Valey writes that, 
``affirmative consent (either oral or, even more stringently, 
written) requires extraordinary (and costly, both in time and 
money) measures to be followed in order for adequate samples to 
be obtained. Even when a carefully designed sampling approach 
can be used, such restrictions can easily increase costs by a 
substantial percentage.''
    The following excerpt from a Congressional Budget Office 
cost estimate corroborates the claims of researchers regarding 
probable cost increases under H.R. 1271. ``Based on information 
provided by Federal agencies and by private researches, CBO 
estimates that enacting this legislation would increase--in 
some cases, dramatically increase--the costs to conduct Federal 
surveys of minors. * * * In sum, CBO expects that the 
requirement of written parental consent could add nearly 50 
percent to the data collection costs of some surveys directed 
at respondents under the age of 18.''
    Because of the dramatic cost increases associated with 
written consent, many important Federal surveys would be 
significantly curtailed or even eliminated because of H.R. 
1271.
          The Crime Victimization Survey by the Department of 
        Justice interviews parents by telephone and, if they 
        consent orally, also interviews their children. This 
        low-cost telephone survey that provides valuable 
        information on rape and sexual attacks, would be 
        impossible under H.R. 1271.
          An ongoing survey of the largest school-based program 
        to prevent youth violence, the ``Resolving Conflict 
        Creatively Program'' in New York City, depends upon 
        surveying a large, representative sample of 
        participating children. The survey director has stated 
        flatly that, ``Active written consent would make this 
        [survey] impossible.''
          The Youth Risk Behavior Survey, run by the Centers 
        for Disease Control, provides data to health 
        professionals and educators regarding the health 
        behaviors and attitudes of high school students. Cost 
        increases under H.R. 1271 would likely cripple the 
        ability of this survey to provide usable data.
          The Drug Use Forecasting (DUF) survey is widely used 
        to assess drug use trends. According to Andrew Fois, 
        Assistant Attorney General, U.S. Department of Justice, 
        ``The written consent provision in H.R. 1271 would 
        effectively eliminate the DUF. A key indicator of drug 
        use and enforcement effectiveness would be lost.''
          Runaway and Homeless Youth Act program evaluations, 
        overseen by HHS' Administration for Children and 
        Families and supported at the State and local levels, 
        question youth on their reasons for seeking help. 
        Questions often relate to ``mental or psychological 
        problems which are potentially embarrassing to the 
        minor or his family'' and ``parental consent is not 
        appropriate in this situation since abuse and neglect 
        and other family problems often lead the youth to run 
        away from home.''
    The information provided by these studies and evaluation 
efforts are critically important to protecting the health and 
safety of America's children. As a nation we must ensure that 
we learn the extent of problems facing our children and what 
responses can be taken by families, communities, States, and 
the Federal government.
    Again, this is not merely an academic concern. As Sue 
Rusche, Executive Director of National Families in Action said 
in her testimony to the Committee:

          Statistics that charted the horrifying rise in drug 
        use in the 70s provided the fundamental impetus for 
        parents to act. Parents were outraged by drug 
        paraphernalia, alarmed by decriminalization, and 
        dumbfounded by ``responsible use'' messages, but their 
        response would have been ``so what? That won't affect 
        my child.'' We couldn't have motivated them if we 
        hadn't been able to show them that these factors were 
        affecting all children, and it was only going to get 
        worse unless we banded together and took action to 
        change it.

    Sue Rusche helped organize a parents' campaign, and worked 
with other community-based groups such as the National Parents 
Resource Institute for Drug Education (PRIDE) and the National 
Federation of Parents for Drug-Free Youth (now the National 
Family Partnership). These parents, working together, got 
results. For example, in 1978 they got the Georgia Legislature 
to pass the nation's first State law banning the sale of drug 
paraphernalia.

              more paperwork in a time of fewer resources

    Our Committee has spent much of this Congress pushing for 
reforms to make government work better and cost less and to 
create systems that are more flexible and responsive to 
individual needs. Today, if a parent wants to exempt a child 
from a Federal survey a parent finds intrusive, all the parent 
has to do is call his or her local school. It's quick, it's 
cheap, and it works. Replacing that system with one creating 
costly and burdensome new paperwork requirements would take 
government in exactly the opposite direction from the one this 
Committee has traditionally followed.
    The written consent requirement of H.R. 1271 will result in 
a flood of paperwork since schools must compile, analyze, and 
save the consent forms for the tens of thousands of students 
who participate in research surveys. The burden of this 
avalanche of paperwork will not fall on researchers, but rather 
on local school employees who help administer the surveys. 
Schools, in the interest of protecting personal privacy, are 
generally prohibited from giving researchers information about 
parents, such as their addresses and phone numbers. Therefore, 
schools, not researchers, would have to spend considerable 
staff time contacting parents by phone or mail to encourage 
them to respond to the written consent request or following up 
with them if they do not respond initially. Because of the 
increased burden on school staff, many schools would be unable 
to participate in the research, thereby lowering the 
representativeness of the response pool.
    The increase in local paperwork is all the more notable, 
and unnecessary, given existing Federal controls. As has 
already been discussed, current regulations insure that 
research is designed to safeguard the privacy and sensitivities 
of minor research subjects. Additionally, Federally-sponsored 
information collection activities are also required to go 
through review under the Paperwork Reduction Act. The Committee 
originated this Act, and most recently strengthened that Act 
through the Paperwork Reduction Act of 1995 (Public Law. 104-
13). The Act established the OMB paperwork clearance process to 
ensure that Federally-sponsored information collection 
activities are not unduly burdensome to the public and are 
necessary for the proper performance of agency functions.
    A witness testifying in favor of H.R. 1271 at the 
Committee's hearing cited a controversial survey as evidence of 
the need for the legislation. The facts show, however, that the 
survey's review under the Paperwork Reduction Act actually 
argues to the contrary against H.R. 1271, showing how well the 
current process is working. This witness described a 
controversial survey on teen sexual behaviors proposed by HHS. 
This study, known as the American Teenage Study, was stopped in 
the development stages during the OMB paperwork clearance 
process because of the sensitive nature of its questions, and 
was never administered to students. Thus, the existing Federal 
process worked to stop the study and no additional requirements 
would have affected it, or would have been needed to halt it.
    That H.R. 1271 both ignores the current Federal process 
controls, and imposes new paperwork requirements on localities 
is evidence of its burdensome and costly impact.

                 h.r. 1271's broad and uncertain scope

    Regardless of the intended purpose of H.R. 1271, its 
explicit language would apply written consent requirements to a 
broad and unprecedented array of community and school 
activities. As currently worded, the bill would cover any 
``program or activity funded in whole or in part by the Federal 
government''. This could include many activities unrelated to 
school-based research surveys or questionnaires. For example, a 
church that receives Federal funds to operate a homeless 
shelter could be required to obtain written consent for 
children to participate in otherwise unrelated and independent 
Sunday school activities.
    Another example of the uncertain scope of the term 
``activity'' was provided by a witness at the Committee's 
hearing who was testifying in favor of the legislation. The 
individual described a classroom exercise called ``Are You a 
Liberal or a Conservative'' that was given in a junior high 
social studies class in Anchorage, Alaska without obtaining 
parental consent. The questions were not part of a Federally-
funded research effort. Rather they were contained in a 
supplement to a political science unit in a textbook called 
``Introduction to the Social Sciences,'' used citywide in the 
Anchorage school district. Nonetheless, the witness stated, in 
answer to a post-hearing question, that H.R. 1271 would 
prohibit the use of such an exercise without prior written 
parental consent because of Federal support for the school.
    The claim that classroom teaching is a covered activity 
under the legislation is also suggested by the legislation's 
qualified exemption of ``tests intended to measure academic 
performance except to the extent that questions in such tests 
would require a minor to reveal information listed [in the 
seven listed areas]'' (sec. 2(c), emphasis added). This 
limitation effectively nullifies the exemption and clearly 
subjects classroom testing to the terms of the legislation, to 
the extent there is any Federal support.
    The bill's very broad and very vague terms extends to the 
seven listed sensitive subject areas. It covers any questions 
that are intended to or have the consequence of eliciting 
information about such undefined general topics as parental 
political beliefs, psychological problems, sexual behavior, 
antisocial or self-incriminating behavior, comments about 
family members, or religious beliefs. These vague provisions, 
coupled with the clear intentions of proponents, declared at 
the Committee hearing, to attempt to enforce the legislation 
through judicial review, point to a future under H.R. 1271 of 
harassed local community and school officials, repeated 
litigation over even the most basic educational curriculum 
decisions, and the steady loss of critical information needed 
to inform program and policy decisions to protect the health 
and welfare of our nation's children.
    This Committee has gone on record repeatedly about the need 
to perform cost-benefit analyses for new Federal requirements. 
The costs here are high in terms of paperwork requirements, 
burdens on school personnel, increased expense and compromised 
research and evaluation. The benefits have yet to be 
established, since the bill's proponents have been unable to 
document any instance of inadequate protection of children 
involving a Federal survey, much less a national problem 
justifying the prohibitive paperwork, cost and research burdens 
that would be imposed.

                            glenn substitute

    We firmly support the use of parental consent procedures in 
all research involving children. H.R. 1271 targets Federally-
sponsored surveys and questionnaires which contain questions in 
seven categories, but there is no reason to limit parental 
involvement to these seven categories. While the current 
regulatory scheme has worked well, Congress could strengthen 
existing policy for all Federally-sponsored research, while not 
eliminating the flexibility that has been achieved at the local 
level. The Glenn substitute, which was offered during the 
markup, did just that, allowing for local flexibility, while 
strengthening existing safeguards for children participating in 
survey research.
    The Glenn substitute bill would have required that, prior 
to the participation of a minor in any Federally-sponsored 
survey or questionnaire:
    (1) At least one parent or guardian is provided with 
advanced notification of the survey;
    (2) At least one parent or guardian is provided with 
information on the purpose of, and the subjects to be covered 
in, the survey;
    (3) At least one parent or guardian is informed of his or 
her right to have access to the survey as a condition of 
consenting to the minor's participation;
    (4) At least one parent or guardian has provided consent 
for the minor's participation in the survey (the type of 
consent required would be determined by the appropriate IRB);
    (5) At least one parent or guardian is notified of the 
means for declining a minor's participation;
    (6) The minor is informed that participation is voluntary 
and that they will not be penalized for declining to 
participate;
    (7) The minor is provided with the opportunity to decline 
participation;
    (8) Information is provided about whom to contact for 
additional information about the survey;
    (9) The parent, guardian, and minor are provided with an 
explanation of the procedures used to protect respondents, the 
confidentiality procedures to protect the information 
collected, and the extent to which any identifier information 
will be maintained;
    (10) The chief administrative officer or designee consents 
to the administration of the survey or questionnaire in the 
institutional setting.
    The Glenn substitute bill would provide for adequate, 
advance notification to parents before a child can be invited 
to participate in any Federally-sponsored survey, and a 
convenient method for parents to decline their child's 
participation. The substitute bill would eliminate the single, 
rigid parental consent mechanism in H.R. 1271 and allow 
flexibility at the local level to decide the method by which 
parents may give consent.

                               conclusion

    In an era of tightening Federal budgets, we need to make 
our research and evaluation dollars go farther. We need 
programs that work better and cost less, not the other way 
around.
    Without many of the surveys affected by H.R. 1271, it will 
be difficult for families, educators, and policy makers to make 
informed decisions about the safety and welfare of children. 
Accurate research is needed on important issues, such as 
substance abuse, violence, and adolescent pregnancy. Parents 
have a right to know what challenges children face in school 
and in their neighborhoods, and public officials have a 
responsibility to ensure that this information is readily 
available to them. Reliable information is needed to alert 
parents and community leaders as well as policy makers when 
children face serious social or health problems. As elected 
officials, we should guarantee that this information is 
available to those who need it most. If this bill is 
implemented, the access to much of this information by parents, 
service providers and policy makers will be impeded or lost.
    Burdening children's research with paperwork that costs 
more, slows down schools, intrudes on parents, and leads to 
less reliable research just does not make good sense. We all 
want to protect American families and their children, but H.R. 
1271 represents exactly the wrong approach.

                                   John Glenn.
                                   Carl Levin.
                                   David Pryor.
                                   J. Lieberman.
                                   Daniel K. Akaka.
                      ix. changes in existing law

    In compliance with paragraph 12 of rule XXVI of the 
Standing Rules of the Senate, requires that Committee reports 
indicate the changes in existing law of the proposed 
legislation. The bill as reported makes no change in existing 
law. It provides new authority for the parents or guardians to 
decide whether to consent to the participation of a minor child 
in federally funded surveys or questionnaires.

                                
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