I fear the copious media coverage of the U.S. Supreme Court’s handling of same-sex marriage might drowned out a pivotal case the Court is hearing right now. At stake is who owns the stuff of which we are made.
As Nina Totenberg reports for NPR, Myriad Genetics and ACLU are arguing about the patentability of our own genetic material. As Christopher Hansen of the American Civil Liberties Union argues:
“A patent isn’t a reward for effort. A patent is a reward for invention. And Myriad didn’t invent anything. The gene exists in the body. All Myriad did is find it.”
But, it may not be as simple as that. Research companies want to be compensated for their efforts. They want to ensure that their work is protected from other profiteers. But, to what extent? Can human genes themselves be patented, or the mechanisms behind them? What is the right of companies like Myriad Genetics to be rewarded for their efforts that contributes to better clinical care and our social good? What are the ethical and moral responsibilities of these companies to put patients first and not keep them from their own genetic information?
Big questions with huge decisions that will impact us and our children.
The “Ten Commandments” of Race and Genetics?
Trent Gilliss, Online Editor
New Scientist’s headline “‘Ten Commandments’ of race and genetics issued” possibly falls into the overly-clever-but-unnecessary category of journalistic wordplay. They took the easy way out; ashamedly, it grabbed my attention.
Mapping the human genome has raised many ethical questions about choices — controversial issues ranging from designer babies to personal privacy rights. But, the issue of using this greater level of genetic detail as a basis for racial stereotypes and discriminatory policies, well, that’s a quieter issue that perhaps has more pervasive reprecussions.
Stereotypes, such as the native physicality of African-American athletes, may be born out by such data, but we may not be taking into account the cultural and social factors that contribute to these conclusions. Because the data may feed our preconceptions and appear to be logical, the scientific methodologies may not be scrutinized as critically as they could be.
A working group at Stanford University debated these assumptions and proclivities. The university organized a working group of geneticists, psychologists, historians, sociologists, philosophers, and scientists from many disciplines to contemplate some of these dilemmas. For instance, biomedical scientists took a more clinical and neutral approach to race when describing groups of individuals; scholars in the social sciences and humanities questioned whether such labels cultural meaning.
The outcome? Ten guiding principles for the scientific community (and journalists) to carry out responsible practices (and reporting). Point number three challenged me to ponder for a bit:
“We urge those who use genetic information to reconstruct an individual’s geographic ancestry to present results within the broader context of an individual’s overall ancestry.”
If they are willing to look at geographical and cultural ancestries for conclusions, how might our spiritual and religious ancestries inform our genetic makeup and defining markers as living individuals today? If we really did our homework and scraped together thorough legacies, what would we learn about our deeper selves and who we were as individuals today? Might we have more in common with groups we’ve felt so alien to? Might we might find greater mystery in our multi-threaded pasts that might explain the evolution of our genetic makeup, our current actions, our abundance, or lack of, spiritual moorings?
