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IN THIS ISSUE

Front Page

Letter from the President

Notes on the Right: The Real “Unmentionable Secret”

Poll Shows Californians Think Race Discrimination Still a Problem

Unique Collaboration with Teachers’ Union Addresses Unconscious Bias in the Classroom

Dismantling the Intent Doctrine: an International View

Inequality in the Gene Age

Two New Books Focus on Rights Won and Lost

EJS Welcomes New Members; Motley Fellowship Launch

Staff/Board News & Notes

Newsletter Editors:
Elaine Elinson
Miguel Gavaldon

Email Feedback

Inequality in the Gene Age

By Osagie Obasagie
Project Director, Center for Genetics and Society

Editors' Note: The EJS staff, concerned about the racial implications of new biotechnological research, invited Osagie Obasagie to brief us on this controversial and often misunderstood pathbreaking field and to share his insights with EJS Newsletter readers.

The new human biotechnologies - stem cell research, genetic screening, and racially tailored medicines, just to name a few - have the potential for great good. We all want to be healthy, and we all want the same good fortune for our friends and family. Yet a critical eye is needed to ensure that our personal drives for good health do not, as we've seen many times in the past, hurt the public good.

The central concern here is that these technologies' ability to reshape basic aspects of life, the blazing speed of their development, and the worrisome absence of rules or regulations to govern their use raises troubling questions about our common human future. Used with precaution, humility, and sensible oversight, these technologies may benefit public health. But misuse could open the door to new forms of inequality where discriminatory attitudes and preferences for certain types of humans can gain legitimacy under the veil of scientific progress. This may lead to justifications for jeopardizing women's health to procure eggs for research, exacerbate health inequalities for communities of color, and spur efforts to "weed out" people with disabilities from the population.

The Center for Genetics and Society stands for the principle that we can and should adopt policies that support scientific progress and sensible medical research while regulating applications that create more inequality or leave women and minorities open to new forms of exploitation. Our key issues inlude:

o Reframing Stem Cell Politics: The United States' stem cell debate has been framed almost entirely as an extension of abortion politics. Unfortunately, this conversation pits fundamentalist conservatives who want to ban all human embryo research against scientists, biotech entrepreneurs, and patients' rights advocates who want the research to continue without what they perceive to be regulatory or ethical barriers. This framing has produced the worst of both worlds: on the one hand, federal funding for legitimate stem cell research remains inadequate while, on the other, scientists and biotech industries are increasingly using state coffers to insure them against this venture's risks while also bankrolling its costs. We need new approaches that extend federal funding to this important area of medical research while promoting reasonable oversight.

o Preimplantation Genetic Diagnosis: PGD is an embryo screening technology that allows individuals to select a child's characteristics (today sex and disability, tomorrow possibly skin tone, intelligence, athleticism, etc.) before it is implanted in a woman's womb. Some disability rights advocates are drawing attention to the growing number of embryos selected against because of the stigmas associated with disability. The number and type of characteristics that people are able to screen for are quickly growing, ranging from severe diseases such as Tay Sachs to conditions that have little to do with health, such as dwarfism.

o Race Based Medicines: Premised upon questionable clinical studies, the Food and Drug Administration recently approved BiDil® as the first drug to be marketed specifically to a racial group: Blacks with heart failure. On its heels, GenSpec has begun selling multivitamins "genetically designed" for specific racial groups. This trend towards a racialized pharmacy gives credence to the largely unfounded idea that racial groups are biologically or genetically different. It also shifts the burden of public health concerns (such as African-American heart failure) to private companies, who hope to make billions by creating new markets. Genetic approaches to health and health outcomes can exacerbate dangerous tendencies to prematurely focus on technological fixes for what are often social and environmental problems.

o Emerging Egg Market: As stem cell research expands, vast amounts of women's eggs will be needed. Recruiting women to provide eggs for research may turn their reproductive materials into commodities for sale. Moreover, paying women for their eggs - as some have proposed - is likely to create a market where economically vulnerable women (typically of color) would be induced to risk their health to cash in on this financial incentive.

We can benefit from some of these technologies without unnecessarily exposing ourselves to their harms. Good governance is key to maintaining this balance. Currently, there is little regulation in the United States, but we can learn from sensible and effective legislative efforts in the UK and Canada on how to open dialogue and protect the public interest while supporting science. Our Center is committed to these efforts, and is collaborating with a growing number of organizations across the country to make it happen. For more information, please visit our website at www.genetics-and-society.org.

Osagie Obasogie, Project Director on Race, Disability, and Eugenics, has been a racial justice advocate and consultant with several public interest organizations. He is a graduate of Yale University and Columbia Law School, where he was a Harlan Fiske Stone Scholar and an editor for the National Black Law Journal.