Genetics, Ethics, and Tasmania

If you're in the Indianapolis, Indiana area on November 10th, join us at the IU Center for Bioethics with Mark Stranger, Ph.D., from the University of Tasmania. Our guest will be delivering a talk on Genetics, Ethics and the Law Down Under: A Tasmanian Perspective from 3:00-4:00PM in the HITS Building, Suite 3100 [Flyer - PDF 74 KB]. Dr. Stranger, a sociologist with expertise in risk assessment, social change, biobanking and social research methodologies, is a Senior Research Fellow and Executive Director for the Centre for Law and Genetics at the University of Tasmania. He also manages the Centre’s multidisciplinary and international Biotechnology, Ethics, Law and Society Network.

This event will be convened by the Indiana University Center for Bioethics; IUPUI Consortium for Health Policy, Law and Bioethics; and the IUPUI Office of International Affairs. - ALG

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.]

Cancer Patients' Attitudes -- New Predictive Health Ethics Research

Bioethics researchers Paul Helft of the Fairbanks Center for Medical Ethics, and Eric Meslin of the Indiana University Center for Bioethics publish paper on patient attitudes towards biobanks - Biomedical research, social science and ethics scholars have been working for over a decade to understand attitudes toward biobanking; "Cancer Patients' Attitudes Toward Future Research Uses of Stored Human Biological Materials" continues the progress of this research. In response to a request for a comment for this blog, Helft noted that a better understanding of attitudes toward biobanking will help to establish: "Policy and best practices for informed consent for future, unspecified research". This newly published research, conducted by Helft, Meslin, and others, provides valuable information to anyone interested in recruiting research participants for, or in shaping the development of, human biobanks. "Our study", Helft remarked, "was one of the few which have assessed the attitudes of patients who actually gave tissue to a biobank under these conditions". The authors found that a significant minority placed restraints on or had reservations about unrestricted future research on their stored tissue. "In developing policy and best practices", said Helft, "we need to understand this group’s attitudes better". - J.O.


Citation:

Helft PR, Champion VL, Eckles R, Johnson CS, Meslin EM. Cancer Patients' Attitudes Toward Future Research Uses of Stored Human Biological Materials. JERHRE. 2007; Sept;2(3):15-22.

Abstract: THE POLICY DEBATE CONCERNING INFORMED consent for future, unspecified research of stored human biological materials (HBM) would benefit from an understanding of the attitudes of individuals who contribute tissue specimens to HBM repositories. Cancer patients who contributed leftover tissue to the Indiana University Cancer Center Tissue Bank under such conditions were recruited for a mail survey study of their attitudes. Our findings suggest that a clear majority of subjects would permit unlimited future research on stored HBMs without re-contact and reconsent, and a significant minority appear to desire ongoing control over future research uses of their tissue. These differences merit further investigation and suggest that a policy of blanket consent for all future, unspecified research would be premature.

Source: http://caliber.ucpress.net/doi/abs/10.1525/jer.2007.2.3.15

[Note: PredictER Blog will announce more research from on attitudes toward predictive health research in the near future.]

Announcing PredictER News Brief: A Digest of Predictive Health and Ethics Research News

The first three issues of PredictER News Brief are now publically available from the “Resources” page of PredictER’s information portal. This news digest reports predictive health press releases, headlines, events, and recent academic publications. These include the following topics: human genetic research, genetic testing and counseling, longitudinal health research, personal health records, pharmacogenomics, translational medical research, public attitudes toward predictive health research, and recent developments in public policy.

PredictER News Brief is a tool for readers interested in the ethical, legal, and social implications of predictive health research. In the near future PredictER News Brief will offer RSS feeds. At this time requests for email subscriptions from PredictER’s Gmail account are welcomed; the digest is published biweekly on PredictER’s web site; visit the tab. “News Digest”. Additional information services and research tools (including: web accessible research databases, subject guides, custom search engines, and a full-text digital library) are currently under development.