Predictive Health, Insurance & Security: A Spiritual Perspective

Over the last few days, I have heard two discussions – one on the radio and the other at the Indiana University Center for Bioethics – that have given me a new and deeper understanding of the meaning of health insurance and of the challenges of incorporating Predictive Health information into healthcare. These two presentations came together to give me a new understanding of the spiritual dimension of health insurance.

The first discussion occurred on the NPR program "Speaking of Faith," hosted by Krista Tippett. This week the program featured an interview with Parker Palmer, a Quaker writer and educator, and focused on themes related to the current economic meltdown. When discussion turned to the role of greed in causing the crisis, Palmer commented that greed stems at least partly from a sense of isolation and a lack of feeling of being part of a community. If a person feels that he cannot rely on others for help at times of need, he will understandably develop the impulse to acquire as much as possible, to attempt to amass a sort of fortress against possible danger to him and his family.

This immediately reminded me of the state of healthcare and health insurance in this country. As premiums rise and increasing numbers of businesses cut back on health insurance for employees and retirees, more and more Americans are living without health insurance or facing the very real possibility of this. And what could cause a greater feeling of isolation – of living without support from others – than finding yourself without available or affordable health insurance? Even those of us who do have health insurance must feel insecure as we observe the growing ranks of uninsured and underinsured people. The historic economic downturn has made the trend only worse, of course.

Palmer’s comment highlights one of the many destructive effects of fearfulness. And it highlights the importance of making health insurance available and affordable. In short, universal health insurance, in my view, would play a significant role in helping to combat the feeling of isolation and helplessness that many feel in the current situation.

And here’s where Predictive Health information comes into the picture. Predictive Health Research (PHR) promises to provide new ways to identify individuals’ specific level of health risk and provide new, more targeted medical care. A healthcare system that provided excellent preventive care, guided by breakthroughs in PHR, could greatly reduce mortality and morbidity. We could improve the sense of safety and trust that supports a healthy spiritual life. But here’s where the fly lands in the ointment. At our biweekly meeting of the PredictER program this week at the IU Center for Bioethics, Eleanor Kinney JD, MPH, and Jennifer Girod JD, PhD, RN, presented a talk about the ways that Predictive Health information threatens to undermine the current system of health insurance. In short, identifying people’s risk levels creates perverse incentives for patients and for insurance companies. Individuals with lower risk have less reason to join the insurance “pool,” since their premiums disproportionately support care for others, rather than themselves. At the same time, insurance companies have the incentive of excluding those at higher risk, or at least charging them higher premiums. As Kinney and Girod pointed out, there are various schemes for blocking this destructive dynamic, although things get difficult pretty fast.

But sitting there listening to them, I realized that once again we were talking about the challenge of how to bind us together as a society and take care of everybody – the high risk and the low risk alike. How tragic if the same scientific breakthroughs that could allow for improved preventive care for all were to result in worse care and isolation for those at the highest risk. That would truly be a situation where isolation, not trust and community, would have its day.

Peter Schwartz, MD, PhD

Translating ELSI – From a Conference at Case Western to the World

An exciting conference occurred last week in Cleveland, Ohio on the past, present, and future of research into the ethical, legal, and social implications genetics (so-called "ELSI" research). If the large number of interesting presentations at this conference is any indication, the field is flourishing. Although I saw relatively few presentations (I was only there for part of the conference), the discussions, the turnout, and the book of abstracts show the rigor and creative energy of a thriving, international group of scholars.

As part of a panel on Saturday morning (May 3rd), I presented a short talk entitled "PredictER: Indiana University's Experience in Translating Predictive Health Ethics Research into Practice". The presentation covered the work that we've been doing at the IU Center for Bioethics on the ethical and legal aspects of predictive health research. Other speakers in the same session described similar work under way in Kyoto, Japan and in Newfoundland, Canada. Genetics is truly a global field, and, thus, so is the project of examining the ethical, legal and social implications of the science and medicine. If we want to insure the ethical practice of genetic science and the equitable sharing of its benefits, the global participation exemplified by the work at this conference, must become a common feature in the investigation of the ELSI of predictive health research. – Peter H. Schwartz

Disclosing Risk: Good Communication or "Doctor-Knows-Best"?

A newly published paper from PredictER's Peter H. Schwartz and Eric M. Meslin, examines the challenges of balancing beneficence and the respect for autonomy in preventive and predictive medicine. In "The ethics of information: absolute risk reduction and patient understanding of screening" (J Gen Intern Med. 2008 Apr 18; [Epub ahead of print] | PMID: 18421509) the authors question whether providing absolute probabilities of risk based, for example, on genetic screening for breast cancer, is always in the best interest of the patient's health. While many argue the respect for the patient's autonomy demands that risk is communicated numerically or graphically, Schwartz and Meslin argue that the disclosures should be made "in the light of careful consideration of patient understanding and possible impacts on uptake and well-being".

Biobanks: Consent or Re-Consent?

Participants donating samples to research biobanks are, often, contributing to a research resource that may be used for unanticipated research purposes in the future. For example, a participant may donate to a cardiovascular research biobank, but this donation might also be of value for future diabetes research. If a secondary use for this donation is discovered, should researchers be required to re-contact participants to secure consent for the previously unspecified research? Many researchers consider the labor of re-contact and re-consent to be a burden that will inhibit future research. Acquiring one-time, general consent for research, therefore, would seem to be the best and most efficient way to encourage the pace of medical research.

Many ethicists, and the World Health Organization (WHO), however, argue that one-time consent violates a research participant's autonomy. If a participant does not have the opportunity to evaluate these possible future uses and to decide whether their sample and information can be used for them, is the importance of informed consent being undermined?

Wednesday, at a noon seminar hosted by the IU School of Medicine's Department of Medical and Molecular Genetics, PredictER's Peter Schwartz critically evaluated some of the most prominent ethical arguments against one-time consent and described the complexity of deciding the role of autonomy in this realm. In his presentation, "Changing the Rules? Consent and Re-Consent in Predictive Health Research", Schwartz argued that it is not clear that a carefully constructed policy of one-time consent violates autonomy of subjects. While it would be inappropriate to justify such “one-time consent” simply on the basis of the social value of the research involved, or public support for such a policy, a careful reconsideration of autonomy may allow certain kinds of “blanket consent” policies. In his assessment, the path forward for consent for research involving biobanks is far from clear, but a possibility like one-time consent cannot be dismissed simply by appealing to a simple notion of autonomy. The crafting of responsible policies in this area will require more careful reflection on the relevant ethical notions.

Additional Reading:

45 CFR §46.116 - General requirements for informed consent. Department of Health and Human Services.

Caulfield T, Upshur RE, Daar A. DNA databanks and consent: a suggested policy option involving an authorization model. BMC Med Ethics. 2003 Jan 3;4:E1. PMID: 12513704

Genetic databases. Assessing the benefits and the impact on human and patient rights. World Health Organization, 2003. [PDF]