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.
“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.
Embracing the Beauty of Genetic Difference
Nancy Rosenbaum, associate producer
Former fashion photographer Rick Guidotti has been taking pictures of people with genetic differences for over a decade. His organization, Positive Exposure, celebrates “the spirit of difference” and “the joy that comes with self-acceptance.” He’s committed to changing how people with genetic conditions all over the world see themselves, and, in turn, how they’re perceived within their communities.
Guidotti is adamant that his work isn’t about illuminating inner beauty. “This is beauty,” he insists. “This is the real deal. These kids are gorgeous, and you see the beauty there exists. We just haven’t been allowed to see it.”
Photographing people with albinism has been central to Guidotti’s efforts with Positive Exposure. In recent years, he’s photographed some of these young women and men in villages in Mali and Tanzania, where the social stigma can lead to ostracization and sometimes life-threatening consequences, and in South Africa at a school for the blind.
When we sat down at a conference in Minneapolis, I asked him to tell me the stories behind some of his photographs, which we’ve included in our narrated slideshow at the top of this post. You can also download the unedited interview (mp3, 29:21) to hear even more of these stories.
Most of us have probably harbored negative feelings about our physical appearance at some point in our lives. When these feelings lodge and fester, they deplete our spirits. I see Guidotti’s images as a visual reminder to be kinder to ourselves and more generous and joyous in how we construe beauty in all its manifestations.
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?