[Congressional Record Volume 146, Number 94 (Wednesday, July 19, 2000)]
[Extensions of Remarks]
[Page E1272]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




             ETHICAL CONCERNS WITH THE HUMAN GENOME PROJECT

                                 ______
                                 

                        HON. DENNIS J. KUCINICH

                                of ohio

                    in the house of representatives

                         Tuesday, July 18, 2000

  Mr. KUCINICH. Mr. Speaker, today I speak about some ethical concerns 
with the human genome project. The recent announcement of the rough 
draft of the human genome presents another milestone in the recent 
human enterprise that we call science. The question before us today is 
the societal consequences of this new development. The role of 
government is to promote the public good, and to this end it is 
necessary to address the public concerns related to the human genome 
project. These concerns may be divided into the following topics: (1) 
reverence for life, (2) privacy concerns, (3) intellectual property 
concerns, (4) modification of the genetic code of individuals, and (5) 
the public's access to data derived from a publicly funded project.
  The propensity for people to use science and technology to pursue 
their ideology is well documented in the eugenics and sterilization 
movements that occurred in both the United States and in Nazi Germany. 
Shall the data from the human genome project be used to terminate the 
birth of individuals who may express genes for childhood diseases?
  Government laws that address the concern of individual privacy must 
be modified to include protection of both the individual's genetic code 
as well as other types of privacy. The President issued an Executive 
Order to protect an individual's privacy in both hiring and promotion 
in the civilian federal work force. These actions are to be applauded. 
Individual protections should be much broader; all countries should 
agree to an international law on human genetic privacy.
  The United States Patent and Trademark Office must strike a balance 
between its Constitutional mandate to promote science and the useful 
arts, and its role in protecting the general public good. Under the 
current system, it is possible to patent a gene without a knowledge of 
the gene's function. This may not be in the public good since it will 
tend to hinder private sector research to cure diseases.
  There are great ethical concerns about the use of the technology to 
modify an individual's genetic code. We are familiar with the abuse of 
medical intervention, specifically injections of human growth hormone 
to alter a child's stature. Parents choose this intervention because 
they perceive that taller children would be at an advantage. Will some 
parents similarly choose to modify their genetic code in order that 
their prodigy will be similarly ``advantaged.'' Will we modify the 
genetic code of parents to produce a new ``master race''?
  Another important public concern whether or not the public will have 
access to the data derived from a publicly funded project. It would be 
consistent with the promotion of the public good that everyone have 
access to the results of the human genome project.
  Finally, we recognize that humankind is more than its genetic code. 
While science can inform us what is, and what can be, the humanities, 
religion, and ethics informs us how we shall be and what we shall be. 
Government oversight has an important responsibility to insure and 
safeguard the public good. While I applaud the human achievement, a 
truly international enterprise, in the ``reading'' of the human genome, 
I urge everyone to address with deep thought and human compassion the 
important societal consequences that I have enumerated.

                          ____________________