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Dark Side Of Genome
Published on Thursday, June 29, 2000 in the Philadelphia Inquirer
Dark Side Of Genome:
Ethical Concerns Including Privacy & Bias
by David Magnus and Glenn McGhee
 
The joint announcement by Celera Genomics Group and the publicly funded Human Genome Project that a working draft and a completed assembly of the human genome have now been accomplished represents an important moment in science.

This is not because there will be immediate transformation of society or instant magic cures. It is important for two reasons - one substantive and one symbolic. The completed "text" of the human genome is an important beginning for science - one that will make possible a rapid increase in our knowledge of genetics that will take place over the next decade.

This will provide many benefits over time and will also pose new ethical challenges. In addition, the triumph of Celera, a corporate effort to map the genome, over the federally funded Human Genome Project symbolizes a new, "private" science that aims at tying discovery to intellectual property and early profits.

The Genome Project, whose development was often compared to the national crusade for an Apollo mission, has finally gone into orbit, but the spaceship is papered with Pennzoil stickers. Stockbrokers will be presiding over the launching pad. Perhaps the final confirmation of this symbolic shift was the White House's embrace of the role of Celera in what would otherwise have been a glory session for big government and public science.

A full sequence of the genome will make it possible to identify genetic contributions to an increasing number of traits; especially those associated with disease. For the next decade at least, this will mean that hundreds of new tests will be developed as clinicians, many working under patent, will offer patients a chance to identify the genetic basis of an increasing number of diseases.

At the same time, there are a number of social and ethical concerns that this increasing power will raise. There is a window of opportunity to make some big social decisions about how to handle human genetic progress.

Who will have access to the new genetic information about our children and ourselves? What protections can be put in place to make sure that our genetic make-up does not lead to employment discrimination, stigmatization, and loss of insurance? Many point optimistically to a patchwork of state laws aimed at preventing genetic discrimination. But many laws aimed at preventing discrimination don't offer protection to those who have a disease that is only "partially" genetic, to those with hereditary disease for which there is no genetic test, or to those who purchase life insurance.

Bigger questions loom about discrimination of a more subtle kind: discounts for parents who agree to make and then genetically test embryos to prevent the birth of a child with a disease. We need better decision-making institutions, more public education and more genetic counseling for families, and we need it now.

Beyond genetic discrimination is the bigger question: What are the limits for engineering, selling, and making products from the genie in the genome? While gene therapy and designer babies do not lurk in the immediate future, it is clear that the race to make more genetic products will result in lots of changes in how we see ourselves, our children and the future of our human race. 

The announcement of the genome assembly is truly spiritual in scope, challenging the clergy, the family and society to think about what makes us who we are, and what kinds of tolerance, wisdom and courage we will need for a genetic future.

David Magnus and Glenn McGhee are faculty members at the Center for Bioethics at the University of Pennsylvania.

© 2000 Philadelphia Newspapers Inc.

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