When I first started working at a UCLA clinical research office about two years ago, I was surprised by the involvement of commercial companies in the university’s research.
And when I left my freshman cluster class on biotechnology and society, I was both surprised and disturbed by the trend toward a lack of personal and health privacy propelled by genetic research, despite the field’s exciting promise.
Apparently, such concerns exist among the elite of the field as well.
When I attended the UCLA Center for Society and Genetics’ annual symposium on Sunday, experts raised questions regarding the state’s collection of genetic information, as well as the relationship between commercial and university research.
For instance, in 2004, California passed Proposition 69, which allows for the state collection of DNA from convicted felons. But in 2009, the state will start including those arrested and charged, but not necessarily convicted.
Speakers and panelists were concerned about the uses of such genetic information by companies and by the government, and emphasized the limits of the amount of knowledge in the field of genetics that we currently hold.
M. Norton Wise, professor of history and director of the center, spoke of the close relationships between universities and commercial interests in general.
About 8 percent of research done at universities is funded by commercial companies, he said.
Wise noted two concerns ““ the unintentional tendency to promote products of that industry, and the altered direction of research toward profit maximization rather than only societal benefit.
For UCLA, Wise suggested the prohibition of gifts from pharmaceuticals and the full disclosure of funding with research results.
A July series in the San Jose Mercury News revealed close ties between researchers and pharmaceuticals at Stanford University.
After the series, Stanford developed policies that prohibited gifts, according to the Alliance for Human Research Protection.
As the symposium went on, the disparity between what the public and what pharmaceuticals and academia know and control became clearer. Participants in clinical research may not know where the funding is coming from, or what the research is being used for.
Ed McCabe, codirector of the center, acknowledged the importance of informing the public, and cited the symposium as the result of such a need.
Panelists also raised questions regarding the disconnect between researchers and the public, as well as concerns for the public regarding the uses of such information.
Panelist Lori Andrews cited a survey in which a staggering number of companies have access to the genetic information of their employees.
I left the symposium with a renewed sense of unease that I had felt upon finishing my coursework on the subject three years ago.
The debates surrounding the methods and uses of genetic research, and medical research in general, seems so far ““ indeed too far ““ from public eyes and ears.
E-mail Mishory at jmishory@media.ucla.edu.