Monday, March 31, 2008

Best Predictive Health Ethics Blogs - March, 2008

See February and January 2008 for prior reviews of the best predictive health ethics blogs. I have limited this month's installment to the ten posts. If, after reading these, you believe I've omitted a good post, please let me know. This month's blogs (listed chronologically) include some familiar names and a couple of new ones, including: Adventures in Ethics and Science, Synthesis, and Genetics & Health.

CF "success" story. Steve Murphy, Gene Sherpas. 1 March 2008.
Steve Murphy of Gene Sherpas seldom shies away from an ethical issue. Thus, when the NEJM reported the good news that "The number of infants born with cystic fibrosis in Massachusetts decreased by 50% from one four-year period to the next" (MedPage Today, 28 February 2008). Murphy acknowledged the upside, "children born with CF in the future may actually have less significant disease and may need to have less aggressive or less early interventions". He reminds us, however, that some doctors and patients now face heavy decisions:

The number of infants born with cystic fibrosis in Massachusetts decreased by 50% from one four-year period to the next according to this letter in the NEJM. They attribute this to the Newborn screening available in Massachusetts since 1999. … But here's what they don't say.....Preconception screening for this disease is important, but a highly personal choice. ... despite what the ACMG and ACOG say. There are some children who are doing just fine with CF. As for adults with CF like the 74 year old patient who I diagnosed a few years ago, I am certain they would not want to have never been born.

Should Researchers Share Data? Janet D. Stemwedel, Adventures in Ethics and Science. 3 March 2008.
Janet Stemwedel of Adventures in Ethics and Science comments on the widely discussed Andrew Vickers essay in The New York Times – "Cancer Data? Sorry, Can’t Have It" (22 January 2008). Stemwedel does an excellent job of highlighting the importance of data sharing for the success of translational research. She also acknowledges the research subject's contribution to this research and the exposure to risk that they have assumed. Stemwedel writes:

[R]isk is supposed to be offset by the benefits of the knowledge gained from the research. If that data sits unanalyzed, the benefits of the research are decreased and the risks undertaken by the human subjects are harder to justify. Moreover, to the extent that sitting on data instead of sharing it requires other researchers to go out and get more data of their own, this means that more human subjects are exposed to risk than might be necessary to answer the scientific questions posed in the research.

How Private is Private? Is Google a covered entity? Cheryl Lew, Women's Bioethics Blog. 4 March 2008.
After observing that HIPAA was not written with Google's emerging patient managed, personal health records in mind, Cheryl Lew of Women's Bioethics Blog wonders if additional government protections might be required. Lew writes:

[W]ill Google patients be subject to advertising spam or other intrusive advertisement adduced from their prescription lists? What guarantees that the “client” (read patient lists) won’t be sold to Pharma companies as yet another means of developing data bases about physician prescribing patterns? Who is going to regulate these issues? Google is a great search engine—I use it all the time! But I’m not sure I want to use it to manage my healthcare information.

Genomes of the Rich and Famous. Jesse Reynolds, Biopolitical Times. 5 March 2008.
Reacting, in part, to "Gene Map Becomes a Luxury Item" (Amy Harmon, The New York Times. 4 March 2008), Reynolds was the only blogger that I know about that picked up on the irony in drive towards celebrity genomics. Reynolds observes:

The prospect of biotechnology companies capitalizing on genetic information in order to develop profitable products without properly compensating the studied populations brings to mind biocolonialism, in which politically and economically vulnerable indigenous groups are exploited. But a growing convergence of genomics and information technology may lead, ironically, to the genetic "exploitation" of society's most elite.

The moral manipulation of Gattaca. Daniel MacArthur, Genetic Future. 6 March 2008.
Daniel MacArthur of Genetic Future is becoming a regular here in the "best ethics blogs" series. This month MacArthur introduces (with help from Black Belt Bayesian) us to an essay on one of the favorite films for bioethics classrooms—Gattaca:

A man is given strong medical evidence that he will die from a heart attack if exposed to the exertions of space travel, thus risking how own life and the lives of his crewmates. Ignoring this evidence, he fakes his way into astronaut training - and inexplicably, we cheer him on. How did the makers of Gattaca steer us towards this bizarre response?

The full essay, by Neven Sesardic and forthcoming in The Routledge Companion to Philosophy and Cinema, 2008, is available online: Gattaca (PDF – 209 KB).

Genetic testing - ‘recreational genomics’ or the future of diagnostics? Elaine Warburton, Genetics & Health. 18 March 2008.
Reacting to editorials in The New England Journal of Medicine and The British Medical Journal, Elaine Warburton of Genetics & Health acknowledges the limitations of the current methodologies, but notes that "introducing innovative genetic testing technology has to start somewhere". Warburton observes that 23andMe and other genomics companies are taking "huge financial and clinical risk[s] in bringing these tests to market". Warburton sees the uncertainty involved as merely a part of the ongoing cycle of research and development:

The tests are in their infancy and each of these companies are transparent in advising their customers of this fact. That said, massive scientific research continues to take place to build on the knowledge base of these tests, so that they may be refined. This process will never end.

Also see Warburton's related post: Ethical guidelines for whole genome studies. 26 March 2008.

The G.I.N.A. could be a bad thing for healthcare. William Gunn, Synthesis. 20 March 2008.
William Gunn of Synthesis was one of the few, perhaps the only, blogger brave enough to buck the current dogma on value of GINA. After reading Marcelino Fuentes's letter in Nature, "How genetic censorship would harm everyone" (PMID:18354455), Gunn agrees, but notes that: "This is all jumping the gun a little" (I hope that's not a pun) "because actual rock-solid, high-confidence correlations between a genetic feature and a disease are still rather rare, but one thing’s for sure: The better you see what’s ahead, the better you can plan for it (whether a insurance company or an individual), and having a good plan leads to better outcomes for everyone". Gunn, however, does not have a problem with acknowledging the potential inequities: "Everyone’s worried about enabling social injustice, but it can’t really be said that our current insurance system in which many are so under-served is really all that great to begin with, so let that temper your thoughts, as well".

So, what do you think? Are Fuentes and Gunn right?

Your personal health: Crowdsourcing healthcare - Pitfalls and possibilities. Deepak Singh, bbgm. 25 March 2008.
Although Deepak Singh writes more often about technology, his comments on the progress of personalized medicine and the feasibility of predictive health are usually thought provoking. In this post Deepak reacts to the many consumer privacy concerns and asserts a firm position on data ownership:

Whether it be personal genetics, or social health, our efforts must focus on consumer education, consumer privacy and perhaps most of all data ownership. Who owns the data? That is the most important question. As has been said before in these parts, we essentially need some sort of license for personal health information that establishes ownership with the person whom the data belongs to, i.e. you or I and who has access and under what circumstances. That’s where education comes in. We need access to a lot of patient information and genetic profiles for personalized medicine to be successful.

Well said, Deepak, but do you also think that patient control and "ownership" of data will improve the pace medical research?

Bringing the genome home ... but why? Sue Trinidad, Women's Bioethics Blog. March 26, 2008,
Sue Trinidad, also a regular here in the "best ethics" series, reflects on the need for oversight in the future of genetic and personalized medicine. Trinidad responds to "Genetic Testing Gets Personal" (Rick Weiss, The Washington Post. 25 March 2008.), which profiles the consumer genetics movement and the companies, like 23andMe and Knome, that are fueling it. Trinidad cautions:

Here's a fact about all these businesses: not a one of them is subject to FDA oversight. So all these claims about health benefits, etc., resulting from their services can be completely false (or at least, not based on evidence), and nothing can be done about it. If you read even a *tiny* bit of the scientific literature on genetics and "personalized medicine," you will be struck by how few experts make such claims, at least for the near term … In the meantime, though, consumers should be protected from grossly overstated or unproven claims. Whether that falls to FDA or to someone else (though the Consumer Protection Agency probably has enough work to do at the moment -- lead paint in toys, anyone?), it seems to me the Feds ought to step up on this one.

Will information on risk genes actually change behaviour? Doug MacArthur, Genetic Future. 31 March 2008.
In this second post form Genetic Future in this edition of the "best predictive health blogs", MacArthur reflects on a recent news article in Science (PMID:18369117). The article and MacArthur are among the few that have bothered to acknowledge what may be the true downfall of predictive, personalized medicine—the patient. To some extent everyone (with or without genetic information) knows and ignores health risks. MacArthur acknowledges this and observes:

[I]f it turns out that genetic information doesn't reduce risk behaviour in the real world, then the impact on public health of the hundreds of millions of dollars spent on complex disease genetics may actually be very small. I'm hopeful that this won't be the case - but it would be nice to have some actual evidence one way or the other....

- J.O.

1 comment:

Deepak said...

Thanks for the kind words. I actually agree that data ownership is a double edged sword. In the end all steps have to be accompanied by education about the value of genetic information and the potential advantages of access by researchers.