The Best Predictive Health Ethics Blogs - June 2008

California and Direct-to-Consumer Genetic Testing:

California's decision to send cease-and-desist letters to thirteen direct-to-consumer genetic testing companies (including 23andME, deCODEme, Knome, and Navigenics) ignited a blogging wild-fire of mostly outraged responses. Some of the more widely read expressions of protest were blogged at Wired Science and include Thomas Goetz's much-echoed Attention, California Health Dept.: My DNA Is My Data (17 June 2008). For an alternative reaction see Steve Murphy's posts on the topic at Gene Sherpa, which include: Do you hear that sound Mr Anderson? (15 June 2008), A$$ Kicking (17 June 2008), and R'Uh-R'Oh Shaggy!!! (17 June 2008). Although many of the replies to Murphy's posts offer only more expressions of outrage, Daniel MacArthur at Genetic Future engages Murphy in a thoughtful exchange beginning with California cracks down on genetic testing companies (15 June 2008) and Cat-fight over California (18 June 2008). Finally, for a good overview of the news and blogging on the subject, see Blaine Bettinger's recent post The Genetic Mess in California - A Round-Up, and My Thoughts (30 June 2008) at The Genetic Genealogist.

Employee Wellness

Matt Mealiffe of DNA and You writes in response to the news that Japan will require companies and local governments to "measure the waistlines of Japanese people between the ages of 40 and 74 as part of their annual checkups" with the standard of "33.5 inches for men and 35.4 inches for women" (see Norimitsu Onishi, Japan, Seeking Trim Waists, Measures Millions. The New York Times. 13 June 2008). In Mealiffe's assessment (14 June 2008), mandatory waistline measurement is "bold social policy" which may be, however, genetic discrimination.

In an unrelated post on a similar topic, Jane Sarasohn-Kahn of Health Populi reports employee attitudes regarding the privacy risks of employers' wellness programs. Writing in Is worker wellness a privacy issue? (5 June 2008), Sarasohn-Kahn summarizes the findings of a recent report: "Employees are concerned that this information could be used to reduce benefits or for even more egregious purposes". An overview of the findings, "Health and Wellness: the shift from managing illness to promoting health" is available from the Center for Studying Health System Change [PDF].

Law & Policy

Andrew W. Torrance of BioLaw: Law and the Life Sciences reflects on the sometimes presumed amoral status of patent law in U.S. – a status that is not presumed in Europe. In Patently Immoral Genes (2 June 2008), Torrance shares the recent, related work of the European Society of Human Genetics ("ESHG") which "has issued recommendations that would severely limit patents on genes in the European Patent Office (EPO) and member states of the EPC." According to Torrance, "the ESHG recommends that the EPO establish an 'ethics committee' to police the patentability of controversial technological innovations". He believes that this news may be of interest to policy makers in the States, including: California Democrat, Xavier Becerra, a sponsor of the "Genomic Research and Accessibility Act" (H.R.-977 – Thomas | GovTrack.us).

Nick Agar writes at What Sorts of People on a report by The Bioethics Council of New Zealand on the completion of its program Who gets born? Pre-birth testing. The report responds to the New Zealand government's decision to fund pre-implantation genetic diagnosis for couples with a high risk of conceiving a child with a genetic disorder. In NZ bioethics council (27 June 2008), Agar notes that "the emphasis is very much on facilitating parental choice, with health professionals given the role of supplying parents with the information they need to make choices consistent with their values". He observes that the Council made a deliberate effort to solicit participation from a wide range of "interested parties", but cautions that there may be "a bit of fallacy of bureaucratic representativeness here – if a committee’s composition approximately matches the representation of various communities in the general population then its pronouncements must be representative of the viewpoints of those different communities".

Personalized Medicine

Reflecting, in part, on the prevalence of "Personalize Medicine" in the recent 2008 BIO Convention, Jennifer Miller at Bioethics International defines the topic and introduces some of the ethical and legal issues. She identifies six ethical issues in Personalized medicine: an introduction, its promises and the ethics (26 June 2008):

(1) just access to, allocation and application of the new technologies, (2) privacy concerns, (3) respecting parties’ autonomy, (4) obtaining quality informed consents, (5) intellectual property rights, particularly in connection with bio-banking, (6) overall resource allocation and prioritization questions ….

Reviews

Bonnie Green, writing for BioethicsBytes (17 June 2008), reviews "An Adventure into Ourselves", the third episode of a four-part television series entitled DNA: The Human Race (Channel 4, 2003). [BioethicsBytes hosts and reviews resources for ethics education. The project aims "to assist in the teaching of bioethics, with particular emphasis on multimedia materials (film, TV, streamed media) as case studies".] Green's thorough review of "An Adventure into Ourselves" marks interesting quotations and highlights the social and political context of the Human Genome Project (HGP). She observes that the series and the episode form "an excellent basis for teaching both the science and bioethics of the HGP and large scale sociotechnical projects". The post also includes YouTube footage from related programming about the X-Prize.

Writing for Gene Expression, "Herrick" reviews Heredity and Hope: The Case for Genetic Screening, by Ruth Schwartz Cowan (Harvard University Press: 2008. 270 pp. $27.95, £18.95). This blogger points to three aspects of Cowan's book on genetic screening. In Heredity and Hope by Ruth Schwartz Cowan (11 June 2008), "Herrick" observes that Cowan distinguishes contemporary genetic medicine from mid-20th century eugenics by 1) showing that "genetic screening is a bottom-up social phenomenon, not a top-down mandate", 2) highlighting the "pro-natalist" aspects of contemporary genetic screening, and 3) sharing happy-ending stories about the proper use of this technology. In conclusion, "Herrick" observes:

Functionally, Cowan does the same thing for genetic screening that The New Republic did for tough-on-crime policies in the 80's and 90's: Cowan does some liberal hand-wringing while telling the reader that no, you're not becoming a Brownshirt if you agree to an amnio.

Remuneration for Healthy Workers: From Sticks to Carrot Sticks?

In July of this year Clarian Health of Indianapolis announced a new health and wellness program for its employees. Employees failing to meet minimum standards for body-mass index (BMI), blood pressure, tobacco use, glucose and cholesterol levels would have been fined $5 per condition per paycheck. Wednesday, NPR's Morning Edition reported that Clarian has revised its health program. The health care institution will not fine "unhealthy" employees, but will offer incentives to encourage healthier lifestyles. This news, also reported in the Indy Star (1 November 2007), will be welcomed by those who are concerned that personal health data, including genetic information, may someday be used in a discriminatory manner in the workplace. If the public strongly objects to requiring a person's BMI and tobacco use to be considered as conditions of employment, it seems even less likely an employer could successfully use a genetic test indicating, for example, an increased risk for breast cancer. Nevertheless, it is still possible, if not likely, that genetic information could be coupled with health-indicators to assess the health risks of individual employees. These individuals might also be encouraged with "incentives" to adopt healthier lifestyles. Before such practices are implemented, employers should think carefully about how employees will interpret these policies. When "unhealthy" individuals are identified with genetic or other bio-information and required to meet certain health goals to receive incentives, are "health incentives" nothing more than repackaged "disincentives"? Could it be that what was once a "stick", is now a "carrot stick"? - J.O.

Health Risk Assessments in the Workplace: Clarian Health, Indianapolis.

At the end of last month Clarian Health of Indianapolis announced a new direction in its wellness and health mission for its 13,000 employees. To enroll for their benefits employees will be required to complete health risk appraisals. Those who fail to meet the employer’s minimum standards for blood pressure, BMI, blood glucose, LDL cholesterol and tobacco use will be fined $5 per condition per paycheck.

Clarian joins many large employers who are attempting to cut health care expenses by offering or requiring health appraisals and incentive-based health promotion measures. As reported by Jessica Marquez in “Being healthy may be its own reward, but a little cash can also help keep works fit” companies (including Delta, Sprint and IBM) are discovering that merely offering a wellness program does not change employee behavior (Workforce Management, September 2005, pp. 66-69 [link requires login]). In fact, as of 2002, Hewitt Associates found that health risk appraisals are increasingly used to refer employees to health intervention programs and 40% of the 960 companies offered financial incentives for participation and/or progress.

Clarian’s announcement drew national attention; negative incentives (docked paychecks) are seldom reported. Coverage in the IndyStar, the La Times and on MSNBC’s TODAY prompted comments from some of the most widely read health and bioethics blogs. Some of these posts, like Kelly Hill’s “Shape Up or Pay Up” (Women’s Bioethics Blog, 30 July 2007), point to the genetic factors in many health conditions and question the fairness of financial disincentives. Hill writes:

[S]hould obesity, high blood pressure, and high cholesterol – things that can be genetic—be looked at with the same light [as smoking]? Should you have to pay $60 a month because your father gave you his high cholesterol?

Arthur Caplan, in “Privacy is the true price of healthy worker discounts” (blog.bioethics.net, 16 August 2007 and MSNBC’s Breaking Bioethics, 15 August 2007), echoes Hills concerns about genetics in the context of personal responsibility:

Who will be next? The guy who skis on the weekends? The woman who wears high heels? What about the family that decides to have a baby, knowing the child may have sickle-cell disease or cystic fibrosis? Will companies be willing to put up with that sort of personal “irresponsibility”?

Caplan’s comment points to an interesting question for the ethics of predictive health. What are the “responsibilities,” personal or social, that accompany a predictive appraisal of one’s health risks? Do individuals with a family history of heart disease have a personal obligation (for the good of the community) to eat well and exercise? If so, who will define and adjudicate these “responsibilities”? Government agencies? Employers? Physicians?