Money – Protect and Grow

From The New England Journal of Medicine
The fear of genetic discrimination in life insurance pervades much of the discussion about the issue. Although editor Mark Rothstein does not ignore this fear, he has drawn together a group of authors who present intelligent and well-reasoned views of the key players in the current debate. The perspective is mainly from the United States, but the book is also relevant to other jurisdictions, since the basic concepts behind insurance, economics, and discrimination are common to many countries. The consumer often assumes that the use of genetic information by insurers can be detrimental only to those people at risk for genetic-based diseases and that, with research advances, an increasing number of people will be subjected to higher premiums or ousted from the life-insurance market. The chapters in this book written by insurance and economic analysts, in particular, tend to challenge this view. Ultimately, it is in the interest of insurance companies to be competitive in the market and to insure as many people as possible. With that in mind, there is hope that a mutually workable position can be reached between insurers and their customers. The access to health information (or a lack thereof) and the social policies involved in insurance systems are at the heart of the issue of discrimination. All of the chapters deal with these topics to varying degrees. At one end of the scale are the insurers, who claim that access to information is vital to their continued survival, and at the other end are consumers and researchers, who are keen to ensure that people do not avoid undergoing potentially lifesaving tests or participating in research for fear of being uninsurable. Several authors question the concept of life insurance as a right, rather than a privilege, raising the point that perhaps people who have testable genetic illnesses cannot participate in the same market for life insurance as people who have less problematic genomes. It is a harsh view, but one perhaps that challenges the life-insurance industry to be more creative in the design of policies. The question of whether insurance companies themselves are legally able to agree as an industry not to use genetic information in setting premiums or in making decisions about coverage is interesting. Most countries share similar notions in regard to prohibiting anticompetitive activities, with many of the prohibitions consistent with concepts in the U.S. Sherman Act. The arguments discussed here tend to favor pushing responsibility for such decisions onto legislatures, rather than allowing for self-regulation by the insurance industry. Clearly, the interests of consumers and insurance companies are unlikely to coincide completely, but such conflict is likely to exist regardless of whether we are looking at genetic information. A voice that I feel is not heard strongly in this book is that of the support organizations for people with genetic diseases. Although insurers claim that they have an adequate understanding of genetic factors, anecdotal evidence suggests an element of actuarial unfairness. Support organizations would be sufficiently well equipped to add another element to the discussion. This book is a handy and informative reference for anyone who is considering the issues related to genetic discrimination in life insurance. Rothstein’s introductory chapter scopes out the issues well, and his concluding chapter clearly and concisely wraps up the various positions of the stakeholders. His advice is clear — that the elected bodies that are ultimately responsible for reform (whatever form that may take) must look beyond simply allowing or disallowing genetic discrimination. The book’s pervading message is that we have a long way to go before we can claim to have dealt with the problems surrounding genetic discrimination in life insurance. We can only hope that the governmental bodies and courts that are dealing with these issues can benefit from studying views that are as balanced and broad as those contained in this book. Annie Mould, B.Sc., LL.B.
Copyright © 2005 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.

Review
“Genetics and Life Insurance addresses for the first time the relationship between genetics and an enormous industry. Professionals in the life insurance field will turn to this book as an authoritative discussion of the relevant viewpoints and issues. A strength of the book is the diversity of perspectives held by the authors of the various chapters.”
—Peter P. Swire, Moritz College of Law, Ohio State University

“This book addresses a topic of great social relevance and succeeds in its intent of offering a balanced perspective on the current debate.”
—Elettra Ronchi, Coordinator of Biotechnology and Health Activities, Organisation for Economic Cooperation and Development

“This book is a handy and informative reference for anyone who is considering the issues related to genetic discrimination in life insurance”
— The New England Journal of Medicine

“This impressive volume, boasting contributions from a variety of perspectives, offers a detailed account of the current and potential uses of genetic information by life insurers. It should be the starting point for anyone who wants to learn more about this important and intriguing topic.”
—Mark A. Hall, Fred D. and Elizabeth L. Turnage Professor of Law and Public Health, Wake Forest University

“With the help of an exceptional collection of contributors, Mark Rothstein has illuminated one of the darkest corners of genetic discrimination—in life insurance. With his usual combination of superb scholarship, wisdom, and common sense, Rothstein shows us where we are and what paths are open for sensible policies in the future.”
—Thomas H. Murray, President, The Hastings Center

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