On June 7, COSSA held its second congressional briefing of the year.  The session, entitled The Genetic Revolution and the Meaning of Life: How Will Society Respond to the Explosion of Knowledge?, focused on the ethical, legal, and social questions posed as a result of advances in health and genetics research. 

The Interplay of Genetic Advances and Race

       Troy Duster, Professor of Sociology at New York University (NYU) and Director of the American Cultures Center and Chancellor’s Professor at the University of California, Berkeley, discussed the role race and ethnicity have played in health research funding policy as genetic knowledge has advanced.  He explained that throughout much of the 20th Century, public consensus existed to fund research on the diseases that had the most widespread impact on the human population.  These included smallpox, tuberculosis, and cholera.  Genetic advances in the later part of the century, however, changed the way segments of the public viewed funding decisions.  

      As research made us aware that varied “gene disorders (occur) at different frequencies in different prime populations,” ethnic groups began forming coalitions to support research efforts on ‘their’ diseases.  As a result, NIH funding is now allotted in many cases at rates disproportionate to the frequency of a given disease in the overall population.  Some of these constituencies, Duster noted, have been extremely successful in their efforts while others have failed to gain much political traction.  These racial disparities have also carried over to the field of pharmacogenomics, as the Food and Drug Administration has recently approved the first drugs aimed at helping individuals from specified ethnic groups.  

      Duster next turned his focus to criminal justice policy and genetic profiling.  He explained that in Great Britain scientific papers have been presented calling on the police to use DNA evidence to identify the most likely ethnicity of assailants.  This would potentially allow the authorities to narrow any existing suspect list for a crime.  And in New York City, former Mayor Rudolph Giuliani and former Police Commissioner Howard Safir proposed taking a DNA sample every time an officer stopped somebody on the streets.  This sample would be compared to the Police Department’s computer database of all entered DNA samples to identify matches.  Duster explained that this would be highly problematic because of racial profiling issues and the disproportionate rates at which individuals of certain races are stopped.  He also noted that former U.S. Attorney General Janet Reno put a stop to the plan and asked the city to create a task force to study the matter. 

Social and Legal Problems Created by Genetic Advances 

Dorothy Nelkin, Professor of Law and Sociology at NYU addressed Emerging Legal and Social Issues in the Genetic Age.  She began by explaining that there has been a great proliferation in the number of publicly and privately held genetic and tissue banks.  As tests that predict future disease become more common, insurers, employers, and a wide array of varied social institutions will seek access to these repositories for information about their prospective clients and employees.  “Questions of access to these data and their confidentiality will be increasingly important in future years and they have not been resolved although they pose unprecedented threats to personal privacy,” noted Nelkin. 

Another major issue presented by genetic research is the conflict between presenting findings to assist the common good versus maintaining secrecy to win extremely valuable patents.  Nelkin explained that studies have found “that scientists delay publication of research results in order to protect financial interests and that those with access to biological materials are less likely to share them when patents are at stake.”  In addition, universities have, in many cases, changed their data sharing policies to protect licensing rights.  This trend could easily delay the development of vital treatments for a wide range of diseases. 

 Cultural Variation in Medical Belief

       Susan Weller, Professor of Sociomedical Sciences at the University of Texas Medical Branch, opened her presentation by explaining that her research is focused on understanding to what extent individuals have the same or similar beliefs in different segments of society.  To test this question, she collaborated with a team of researchers to measure AIDS knowledge of Latino populations in four diverse areas: Hartford, Connecticut; Edinburgh, Texas; Guadalajara, Mexico; and the Pacific Coast of Guatemala. 

The study found that the responses in Connecticut featured the highest rate of homogeneity in responses (.72), followed by Texas (.62), Mexico (.55), and Guatemala (.48).  Weller pointed out that homogeneity increased as prevalence of AIDS in the population also increased.  The study also found that agreement was highest between those samples sharing geographic proximity; the Connecticut and Guatemala responses featured the lowest level of agreement (63% of the items, compared to 77% for Mexico and Guatemala or 76% for Connecticut and Texas).  Weller concluded by noting that responses in all four sites were in line with biomedical assumptions about the disease and that variation in responses was more characteristic of less information rather than different beliefs.

COSSA will prepare edited transcripts of the seminar, which included a question and answer period.  These should be available by the end of the summer.  If you would like a copy, please e-mail cossa@cossa.org.      

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