Wednesday, December 26, 2007

Hoosier Eugenics: What would a Christian, Libertarian, Economist Think?

How many Christian-Libertarian-economists are there in the not-so-wide state of Indiana? I'm guessing one: Eric Schansberg, candidate for U.S. Congress, 9th District of Indiana, and the author of SchansBlog. In his recent post, Hoosier Eugenics: A Horrible Centennial, Schansberg weighs in on Indiana's eugenics history and future. Although, given his unique political, religious and intellectual allegiances, most readers will find at least one or two sentences to serve as fodder for scoffing--I did--Schansberg has given more thought to this issue than do most blog authors. In Indiana, a state in which conservative Christian beliefs and attitudes are common, Schansberg is right to recall (in passing) that some of Indiana's religious leaders approved of the state's eugenics programs. Of course, he dismisses these individuals as "liberal Protestants with their Social Gospel", but (to his credit) Schansberg goes on to discuss the controversial "eugenic" opinions of a contemporary, conservative Christian leader--Dr. Albert Mohler, the president of the Southern Baptist Theological Seminary. Schansberg quotes from Mohler's commentary "Is Your Baby Gay? What If You Could Know? What If You Could Do Something About It?" In the eighth of ten points on the subject, Mohler writes: "If a biological basis is found, and if a prenatal test is then developed, and if a successful treatment to reverse the sexual orientation to heterosexual is ever developed, we would support its use as we should unapologetically support the use of any appropriate means to avoid sexual temptation and the inevitable effects of sin." Schansberg seems to disagree with Mohler, as this aside would suggest: "it was left unsaid how Mohler would handle a biological disposition toward alcoholism, pornography or anger. Presumably, the same conclusion applies." He doesn't, however, unequivocally reject Mohler's musings; instead, Schansberg concludes by asking the question: "[W]hen is modern technology a useful way to improve life in an ethical manner?" As a candidate that doesn't seem to worry about alienating the mainstream, it's unlikely that Schansberg is looking for a way to avoid a decisive statement. So, perhaps, he is genuinely asking for more time to think about the issue. Whatever the case may be, he should be commended for discussing the ethical implications for the future and current practice of genetic medicine Indiana.

By the way, if any of PredictER Blog's readers would like to know more about the history of eugenics in Indiana, be sure to investigate the holdings of the Bioethics Digital Library at the Indiana University Center for Bioethics (the home of PredictER). Also see the Indiana Eugenics History & Legacy 1907-2007 Web site (Project Director: William Schneider, Ph.D. Department of History, Medical Humanities-Health Studies Program, Center for Bioethics, IUPUI).

[Photo: "The greatest blessing for a child is to be born of healthy parents"; The Indiana mothers' baby book: a brief treatise for mothers upon pregnancy, preparation for and management of labor, the care of mother and child, and breast and bottle feeding / Indiana State Board of Health. BEDL.]

Friday, December 21, 2007

PredictER's News Digest

PredictER News Brief (a bi-weekly, electronic newsletter) is now published on the PREDICTER-L listserv. PredictER Blog's readers (and any other interested person with an email address) may subscribe to this publication by sending an email to with "subscribe PREDICTER-L" in the message body.

If you would like to see the most recent issue of PredictER News Brief before subscribing to the listserv, visit the News Digest tab on the PredictER Portal. Also see the archive of ten prior issues, accessible from the PredictER Resources tab.

Wednesday, December 19, 2007

GINA? Not in the omnibus.

In a recent email to the Genetic Alliance listserv, Sharon F. Terry (President and CEO, Genetic Alliance) announced that the Genetic Information Nondiscrimination Act (S.358) "is not included in the omnibus bill that will come out of the rules committee tonight [Dec. 16] in the House". Terry adds that the House "is worried about a veto from the President, and wants the omnibus to be as noncontroversial as possible".

Two versions of the omnibus, H.R. 2764: Department of State, Foreign Operations, and Related Programs Appropriations Act, 2008, have now passed in both the House and the Senate. Before sending the bill to the President, a conference committee of senators and representatives will work to justify differences in the versions. - J.O.

Monday, December 17, 2007

Predictive Health Legislative Update: GINA, HIPSA and more ...

If you are interested in U.S. legislative developments that may impact the progress of predictive health and genetic research, you've probably heard of The Genetic Information Nondiscrimination Act (GINA). If enacted, GINA (S.358) would "prohibit discrimination on the basis of genetic information with respect to health insurance and employment". Although widely supported, GINA's progress has been stalled by the opposition of one legislator, Sen. Coburn [OK]. Coburn has placed a block on the bill and offers an evolving account for his opposition. As reported in Wired, November 17, 2007, Coburn objects to "the possibility that an employer who provides health insurance for its workers could be sued both as an insurer and as an employer". The bill's sponsor, Rep. Slaughter (NY), dismissed the latest justification for Coburn's hold as "creative".

Although GINA has received the most attention from the press and legislators (and rightly so, as it is only one roadblock away from a vote) other bills relevant to predictive health research have also been introduced. Like GINA, two of these were written with the intent to enhance the privacy of medical records. Both of these are currently waiting for review in the Senate's Committee on Health, Education, Labor, and Pensions:

S.1455 National Health Information Technology and Privacy Advancement Act of 2007
Introduced May 23, 2007, this bill aims "to provide for the establishment of a health information technology and privacy system". The bill's sponsor, Sen. Sheldon Whitehouse [RI], and four cosponsors ask for creation of the "Office of the National Coordinator for Health Information Technology". Among other things, this new "nonprofit national health information technology and privacy corporation" would identify rules for the research use of non-identifiable health care data.

S.1814 Health Information Privacy and Security Act (HIPSA)
HIPSA, reviewed here at PredictER Blog, was introduced by Sen. Leahy [VT] on July 18, 2007. While intending, in part, to "promote the use of non-identifiable information for health research", the bill strengthens personal privacy protections. If passed, individuals would be permitted to inspect a copy of this information and would be notified of security breaches. HIPSA also requires the Health and Human Services Secretary to provide "model written authorization for the disclosure" of health information and establishes criminal and civil penalties for intentional violations.

Readers interested in the development of biobanks and genetic databases for pediatric research, will want to follow the progress of a third bill: S.911 Conquer Childhood Cancer Act of 2007. This bill amends the Public Health Service Act to establish a grant mechanism to sponsor the creation of a national, population-based database for pediatric cancer research—the Childhood Cancer Research Network. The Act, introduced by Sen. Reed [RI], would also provide grants for Research Fellowships and for the public awareness and communication efforts of relevant advocacy organizations. This bill was recently reviewed by the Senate's Committee on Health, Education, Labor, and Pensions and placed on the Senate Legislative Calendar (see General Orders, No. 535). A version of the bill is also making its way through the House of Representatives; H.R.1553 is sponsored by Rep. Deborah Pryce of Ohio and was referred to the House Subcommittee on Health on March 16, 2007. - J.O.

Subscribe to PredictER Blog for updates on these and other legislative developments.

Friday, December 7, 2007

Genealogy, Genetic Medicine and Getting the Story Straight

What is the promise of personalized medicine and predictive health? Here's a rough description: physicians will know more about individual patients and will therefore be better equipped to provide care. But will it be so simple? In any field, the acquisition of more information, even accurate information, does not necessarily lead to successful application. So, let's say we all buy a test from 23andMe or deCode or Navigenics or any of the growing list of direct-to-consumer genomics company ... and we unpack every last bit and byte of our genetic data, will the world be a healthier place? Or, let's say, just a few of us fork over the $1000 to have our genomic fortunes told … are we really ready for the complications that this information may bring?

If the practice of genetic genealogy is any indication, the future of medicine in the genomic era will be suffused with complications. Nancy Berlinger, of Bioethics Forum, provides an engaging and insightful account of a few of these in "And I am Marie of Romania: Genetics, Genealogy, and the Ethics of Storytelling". Berlinger adds to the ongoing commentary on the new Henry Louis Gates, Jr. venture, AfricanDNA. Gates started this venture, in part, because of frustrations with inaccurate and misleading genetic genealogy results. As Berlinger writes, the misinterpretation (that Gates possesses a genetic link to those once living in the ancient North African kingdom of Nubia, and not, as it turns out, to a less impressive European "servant" in the American colonies) might have been the result of poor science, but also, might be attributed to "wish fulfillment on the part of geneticists and their clients".

To the Gates story, Berlinger contributes related accounts of individuals receiving, accurate, but potentially unwelcome, genealogical information. While America still struggles with its racist inheritance, individuals like Bliss Broyard struggle with new found genealogical information (see her new memoir, One Drop: My Father’s Hidden Life — A Story of Race and Family Secrets). Every one has family secrets--information we are not privy to at the moment--and (as Matt Mealiffe reminds us in Who's Your Daddy?) there's no reason to believe that all or even most of these secrets are about race. Clearly, genetic genealogy (as Blaine Bettinger often notes) is no simple task--will personalized, genetic medicine be any easier? Who will hold and who will expose the secrets in your genome? Is it possible, just maybe, that a one or two of the most enthusiastic, early adopters of personalized medicine will discover a few things they'll wish they'd never known? - J.O.

Wednesday, December 5, 2007

Nature Expands Open Access Publication for Genomic Research

In an editorial published today (Shared genomes) Nature Publishing Group announces enhanced open access to the publisher's genome research articles. The new "creative commons" licence allows non-commercial publishers to copy and reuse the items. Authors may also deposit preprints in institutional repositories.

Citation: Nature 450, 762 (6 December 2007) | doi:10.1038/450762b; Published online 5 December 2007.

Related: NPG author licence policy.