Top News Stories of the Year
Posted by Jesse Reynolds December 23, 2009
Biopolitical Times
Nadya Suleman, a.k.a. OctoMom ™
As 2009 opened, the birth of the only fully surviving set of octuplets triggered an unprecedented torrent of criticism. During a period in January, each day seemed to bring new revelations of Nadya Suleman’s brazen irresponsibility. The term “OctoMom” quickly entered our pop-culture lexicon; by year’s end it had garnered six million hits on Google and had been ensconced by the New York Times as a buzzword of the year.
More importantly, the media explored the lack of oversight of the $3 billion baby business (1, 2, 3). Following calls by the Center for Genetics and Society and others for action, Suleman’s fertility doctor was expelled from the American Society for Reproductive Medicine. Moreover, the ASRM tightened its nonbinding guidelines and quietly broached the question, “Is it time for oversight?”
The Next Step in Designer Babies?… Not for Now
A second high-profile fertility-industry controversy – also originating in southern California – came quickly on the heels of the OctoMom saga. In February, the Wall Street Journal revealed that Jeffrey Steinberg’s Los Angeles fertility clinic was offering pre-pregnancy genetic selection for hair color, eye color, and skin complexion. Steinberg has long opined that there should be no limits on prospective parents choosing children’s traits. He was even one of the few to defend Nadya Suleman. He dismissed concerns about “cosmetic selection” of future children by equating it with plastic surgery: “I live in L.A. and everyone here wants to have a straight nose and high cheekbones and are perfectly happy to pay for cosmetic surgery.” Under pressure, Steinberg suspended the program for the time being, citing "apparent negative societal impacts."
Databases Gone Wild
2009 saw a number of developments related to DNA databases. In January, Proposition 69 went into effect in California. Before that, only those convicted of felonies had to submit their DNA to authorities for inclusion in state databases. Now, anyone who is merely arrested for felonies also has to submit samples. The new law has been challenged by the American Civil Liberties Union.
Across the pond, the conversation on DNA forensics continued to flourish, with much alarm sounding after the Human Genetics Commission issued a report noting (among other things) that three quarters of Black men between 18-35 are in the UK databases and reporting on claims that police routinely arrest people just to get their DNA included. Watch for more DNA forensics fireworks in 2010.
The Case against Human Gene Patents
Concerns over the patenting of human genes have been growing for years. In May the American Civil Liberties Union and the Public Patent Foundation filed a lawsuit challenging their constitutionality in general, and that of Myriad’s patent on genes related to breast cancer specifically. The case is likely to take years to work its way up the courts. The plaintiffs and supporters include major scientific organizations (the American Society for Clinical Pathology and the American College Of Medical Genetics as plaintiffs; the American Medical Association and the March of Dimes as amici); women’s health groups (including Breast Cancer Action and Our Bodies Ourselves as plaintiffs), and individual researchers, genetic counselors, and cancer patients. We and allied groups filed an amicus brief. Perhaps coincidentally, the US Secretary's Advisory Committee on Genetics, Health and Society recommended that gene patents be exempted from infringement liability – a significant policy shift that would give researchers access to patented genetic information and allow medical providers to offer tests even on genes that are patented.
Direct-to-Consumer Gene Test Companies Struggle and Pursue New Markets
The rise of consumer and recreational genetics was all the rage in 2008, but hit rough terrain this year. The downturn in the economy took down one industry leader, Iceland’s DeCODE Genetics, and appeared to limit 23andMe’s ability to tie its brand to the elite of Hollywood and Davos. The company responded by targeting their advertising at expectant mothers, arguing that toddlers and children be tested, and launching a discounted version of their product that requires consumers to become even more engrained in its already mandatory research database. The Google-backed company also tried to get an early-mover’s advantage on regulation by sponsoring a bill in the California legislature.
Obama Opens a New Chapter on Stem Cell Politics
The polarized debates over human embryonic stem cell research were already cooling, but newly-inaugurated US President Barack Obama took a decisive step by fulfilling a campaign promise to expand federal funding. His March executive order limited support to lines ethically derived from embryos created during but not used by fertility treatments. Cloning-based research, once a centerpiece of some advocates’ campaigns, went largely unmentioned. In the course of his comments, Obama used cautious language describing stem cell research, and said that reproductive cloning is "dangerous, profoundly wrong, and has no place in our society, or any society."
As 2009 opened, the birth of the only fully surviving set of octuplets triggered an unprecedented torrent of criticism. During a period in January, each day seemed to bring new revelations of Nadya Suleman’s brazen irresponsibility. The term “OctoMom” quickly entered our pop-culture lexicon; by year’s end it had garnered six million hits on Google and had been ensconced by the New York Times as a buzzword of the year.
More importantly, the media explored the lack of oversight of the $3 billion baby business (1, 2, 3). Following calls by the Center for Genetics and Society and others for action, Suleman’s fertility doctor was expelled from the American Society for Reproductive Medicine. Moreover, the ASRM tightened its nonbinding guidelines and quietly broached the question, “Is it time for oversight?”
The Next Step in Designer Babies?… Not for Now
A second high-profile fertility-industry controversy – also originating in southern California – came quickly on the heels of the OctoMom saga. In February, the Wall Street Journal revealed that Jeffrey Steinberg’s Los Angeles fertility clinic was offering pre-pregnancy genetic selection for hair color, eye color, and skin complexion. Steinberg has long opined that there should be no limits on prospective parents choosing children’s traits. He was even one of the few to defend Nadya Suleman. He dismissed concerns about “cosmetic selection” of future children by equating it with plastic surgery: “I live in L.A. and everyone here wants to have a straight nose and high cheekbones and are perfectly happy to pay for cosmetic surgery.” Under pressure, Steinberg suspended the program for the time being, citing "apparent negative societal impacts."
Databases Gone Wild
2009 saw a number of developments related to DNA databases. In January, Proposition 69 went into effect in California. Before that, only those convicted of felonies had to submit their DNA to authorities for inclusion in state databases. Now, anyone who is merely arrested for felonies also has to submit samples. The new law has been challenged by the American Civil Liberties Union.
Across the pond, the conversation on DNA forensics continued to flourish, with much alarm sounding after the Human Genetics Commission issued a report noting (among other things) that three quarters of Black men between 18-35 are in the UK databases and reporting on claims that police routinely arrest people just to get their DNA included. Watch for more DNA forensics fireworks in 2010.
The Case against Human Gene Patents
Concerns over the patenting of human genes have been growing for years. In May the American Civil Liberties Union and the Public Patent Foundation filed a lawsuit challenging their constitutionality in general, and that of Myriad’s patent on genes related to breast cancer specifically. The case is likely to take years to work its way up the courts. The plaintiffs and supporters include major scientific organizations (the American Society for Clinical Pathology and the American College Of Medical Genetics as plaintiffs; the American Medical Association and the March of Dimes as amici); women’s health groups (including Breast Cancer Action and Our Bodies Ourselves as plaintiffs), and individual researchers, genetic counselors, and cancer patients. We and allied groups filed an amicus brief. Perhaps coincidentally, the US Secretary's Advisory Committee on Genetics, Health and Society recommended that gene patents be exempted from infringement liability – a significant policy shift that would give researchers access to patented genetic information and allow medical providers to offer tests even on genes that are patented.
Direct-to-Consumer Gene Test Companies Struggle and Pursue New Markets
The rise of consumer and recreational genetics was all the rage in 2008, but hit rough terrain this year. The downturn in the economy took down one industry leader, Iceland’s DeCODE Genetics, and appeared to limit 23andMe’s ability to tie its brand to the elite of Hollywood and Davos. The company responded by targeting their advertising at expectant mothers, arguing that toddlers and children be tested, and launching a discounted version of their product that requires consumers to become even more engrained in its already mandatory research database. The Google-backed company also tried to get an early-mover’s advantage on regulation by sponsoring a bill in the California legislature.
Obama Opens a New Chapter on Stem Cell Politics
The polarized debates over human embryonic stem cell research were already cooling, but newly-inaugurated US President Barack Obama took a decisive step by fulfilling a campaign promise to expand federal funding. His March executive order limited support to lines ethically derived from embryos created during but not used by fertility treatments. Cloning-based research, once a centerpiece of some advocates’ campaigns, went largely unmentioned. In the course of his comments, Obama used cautious language describing stem cell research, and said that reproductive cloning is "dangerous, profoundly wrong, and has no place in our society, or any society."