The President’s Commission for the Study of Bioethical Issues met last week at the University of California San Francisco. One hot topic on its plate was the relationship among whole-genome sequencing, privacy and informed consent.

These are sticky and challenging questions that need careful thought. Unfortunately, the meeting seemed to pass over a number of key points too quickly. With a few exceptions (most notably the excellent presentations by Pilar Ossorio and George Annas), the discussion fell into a number of the same-old pitfalls that so often surround discussions of genomics: over-emphasizing the urgency and imminence of genetic cure-alls, neglecting unique concerns surrounding privatized genomics, and recommending technological solutions to social problems.

The subtext of the commission’s discussion was the vast promises that are routinely made about the introduction of genomics into health care. Of course, there’s nothing wrong with emphasizing the potential benefits of genomics. What is problematic, however, is the creation of a false opposition between genetic privacy and scientific progress. 

A remark by participant Daniel Masys is emblematic:  “The genome will tell the book of humanity, and as it is, we only understand one third of the words,” he said. “My major concern is that privacy not materially inhibit the ability to decode that book and understand what that means.” 

The idea here – that we may have to throw privacy concerns under the bus in a race to save humanity by sequencing as many genomes as fast as possible – is an unhelpful way to frame the discussion. It neglects the fact that there’s no compelling reason that maintaining privacy has to interfere with research. And it serves as an apologia for postponing the creation of real safeguards.

One set of privacy-related safeguards that clearly needs bolstering surrounds informed consent. This issue, of course, is not confined to genomics. As medical ethicist Harriet Washington pointed out in a recent article, the erosion of informed consent is taking place in a wide variety of contexts already. 

Nonetheless, providing meaningful informed consent in the context of genomic data storage presents unique challenges, as discussed in the testimonies of Jane Kaye and John Willbanks. Kaye and Willbanks both criticized clunky and misleading consent forms and noted that stored genetic data is often used in a plethora of research projects, about which patients are often left in the dark.

Both Willbanks and Kaye focused on technical fixes, designed to provide a consent structure for individuals who opt to share their genetic information. Kaye proposed an ‘e-governance’ solution, based on “flexible governance software” that would notify patients how their data was being used as the research process progressed.

While such arrangements might be part of the solution, they are not by themselves sufficient. Software-solutions neglect the especially challenging concerns raised by for-profit genetic databases. 

Currently, for-profit biobanks can shop out genetic information without the knowledge of the individuals who provided it. Do people who consent to having their genetic information stored have any idea that private companies are profiting off it? Do they know that corporations can sell the data to whomever they like? 

Designing better genomics software is not enough to address these concerns. Robust regulation of commercial biobanks and personal genomics corporations is also necessary. But discussion of legislative solutions remained remarkably absent from the Commission’s discussion.

It’s a relief to see the President’s Commission beginning to address these issues.  But it’s also time to deepen the discussion. 

We regret to share the very sad news that Charles Weiner, an eminent scholar of the history of science and technology at MIT as well as a friend of the Center for Genetics and Society, passed away January 28. Charlie devoted his scholarly career to the politics and history of nuclear and genetic science.  MIT’s obituary of Charlie calls him “the pre-eminent historian of his generation focusing on the political, social and ethical dimensions of contemporary science and the responses of scientists to public controversies arising from their work.”

Among his many accomplishments, Charlie wrote four books:

• Exploring the History of Nuclear Physics
• History of Twentieth Century Physics
• The Legacy of George Ellery Hale (with Helen Wright and Joan Warnow)
• Robert Oppenheimer: Letters and Recollections (with Alice Kimball Smith).
  

Most people who hire a surrogate to carry and deliver a baby for them are women who cannot become pregnant or have been advised not to for medical reasons, or men (typically same-sex couples) looking to become parents. But some women who opt for surrogacy face no biological barrier; they say they’re too busy to be pregnant, or don’t want to lose their figures.

It’s impossible to know how common “social surrogacy,” as it’s sometimes called, really is. It popped up last week in an article in The Telegraph of Calcutta, India, about an American woman who got frustrated by delays in getting an Indian passport for her surrogacy-produced baby, and walked out of the government office in a huff, leaving the infant on a bench. It’s a strange and sad story. But what really caught my eye was this statement from a Hyderabad fertility doctor:

“Most of the clients are women from well-to-do Indian families who want to avoid childbirth so that their lifestyle, or body shape, is not affected,” said Srinivas Prasad, a doctor at one of the city’s top 15 fertility centres.

who can't afford the risks of pregnancy or carrying to term, or of losing precious time from their burgeoning careers, or who might find it hard getting into fighting shape and sloughing off weight again, then off-the-shelf (adoption: Madonna and Brangelina) or right from the factory (surrogacy: Kidman, Bassett, Sara Jessica Parker) might be just what the doctor ordered.

successful businesswomen, actresses, athletes and models are among those opting for ‘social surrogacy’. They cite career pressure, the pain of childbirth and the prospect of stretchmarks as the main reasons for avoiding pregnancy.

Plain and simple, if you are too busy or stressed out about how your body will look after a 9 month pregnancy and childbirth then perhaps YOU, my friend, are not prepared for motherhood!

Previously on Biopolitical Times:

• Surrogacy and Baby-Selling: Latest Fertility Industry Scandal
  
• The rich are different from you and me: Yes, they hire surrogates
• Breadline or egg line?
  

Blogs in India were abuzz last week after the Times of India ran an ad – and then a news story about the ad – from a couple in Chennai who are willing to pay 20,000 Rupees (about US $388) for "IITian sperm."

An "IITian" is a student at the Indian Institutes of Technology, established by the government to train scientists and engineers. The typical payment to sperm “donors” in India, according to a 2010 article in the same newspaper, is “Rs 1,000 to Rs 2,000” per sample.

The designer-sperm ad described the ideal gamete provider as "an IIT student, healthy, no bad habits, tall and fair, if possible." (In India as in a depressingly large number of other places, “fair” fetches an extra premium.)

According to the Times of India report, many IIT students were “shocked” by the ad, describing it as “insane,” “ridiculous,” and “weird.” Another news story quoted a student who called it “absolute rubbish.” And the online magazine Drishtikone responded with an account of policies and debates about “designer babies” (including a mention of the Center for Genetics and Society). The Drishtikone article concluded:

If you can order your “Just in Time” and “Customized” baby – like some order their cars now – then do you think people will stop at anything?

This could lead to a new type of apartheid and caste system, where the rich will create a community of tall, fair, blue eyed, blonde haired, and above-normal intelligent “special class.” Those without money will be a large outcaste society of the exact opposite.

Previously on Biopolitical Times:

• "Racial alchemy" - for real?
• The recession, sperm banks, and eugenics
• "What color is the baby?" Green?