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Genetic links to nicotine addiction: ethics of testing teens

Institution: Stanford University
Investigator(s): Thomas Raffin, M.D.
Award Cycle: 1999 (Cycle 8) Grant #: 8IT-0123 Award: $115,591
Subject Area: Epidemiology
Award Type: Inno Dev & Exp Awards (IDEAS)

Initial Award Abstract
Studies are currently underway to examine the genetic, environmental and metabolic contributors to smoking initiation and nicotine dependence. Research seeks to identify particular genetic mutations or polymorphisms that may predispose individuals to smoke or make them particularly susceptible to the effects of addictive substances such as nicotine. Most common illnesses or traits are multifactorial; a single gene is rarely implicated. With the dramatic increase in teenage smoking, the hope is that multifactorial studies will lead to new and innovative prevention and treatment approaches.

Genetic testing for susceptibility to behavioral traits such as smoking raises complex questions and serious ethical dilemmas, however. When the potential research subjects or users of a genetic test are minors, the concerns become even more accentuated. Since the current candidate genes have also been associated with other addictive behaviors, as well as serious mental illness, testing programs that aim to prevent teens from smoking may reveal potentially harmful information about their future health. Who should provide informed consent for teens to participate in such studies? Do they and their parents understand the implications of participation in genetic research? What safeguards must be in place to assure the adequate protection of study participants? Are such safeguards currently in place?

Investigators at the Stanford Center for Biomedical Ethics propose to study the emerging ethical dilemmas which accompany our scientific efforts to reveal genetic contributions to nicotine addiction, and smoking behavior more generally. The Stanford Program in Genomics, Ethics, and Society (PGES), a multi-disciplinary program established in 1995, conducts basic research and policy analysis targeted to advances in human genetics. Through a combination of empirical research and policy analysis, PGES investigators strive to identify and proactively address the ethical dilemmas involved with genetic research. For this study, we will develop appropriate instruments, such as interview guides, to investigate how teens understand participation in such research as well as the broader issues of genetic predisposition to smoking initiation and nicotine dependence . Simultaneously, we will establish an ethics working group that will examine policy issues and develop guidelines based upon empirical research and examination of ethical concerns.

Final Report
Background and summary of progress: Genetic research on smoking, in particular susceptibility to nicotine addiction, is currently underway with the hope that this will lead to innovative strategies for cessation and prevention of tobacco use. As scientists attempt to discover associations between genes and specific smoking behaviors, appropriate characterization of ethical and social issues requires a thorough understanding of how this genetic paradigm is going to influence public health prevention strategies, medical approaches to prevention and cessation, and public attitudes toward smoking and smokers. With this IDEA award, investigators at the Stanford Center for Biomedical Ethics sought to delineate key ethical, social and policy issues that accompany these scientific efforts. During this planning grant we performed a literature review to assess the state of the science; established a collaboration with researchers examining the genetic and environmental determinants of smoking; developed a semi-structured interview guide; conducted and analyzed more than 20 interviews with genetic research subjects and experts in health policy and addiction research; and assembled a 12-member multidisciplinary Ethics Advisory Board. These activities served as a basis for the preparation of educational material related to informed consent, and more generally, to lay the groundwork for future research proposals.

Major outcomes and future direction: Acknowledging the complex interplay between biological, behavioral and environmental determinants of tobacco use, experts’ views about the genetic contribution to smoking converged toward the following scenario: It will take 10 years or more before genetic-based interventions are developed; many genes with weak effects will be identified instead of “a gene” with strong effects; the genes will most likely play a role in addiction and in the inability to quit, rather than in the initiation of smoking. Although most respondents believed that smokers are likely to blame their smoking on something other than themselves (genetic make-up being a prime candidate), genetic research subjects stated that self-responsibility should prevail because individuals ultimately exercise conscious choice even in the face of an addictive activity like smoking. Our preliminary policy analysis suggests that the following three issues require further research: 1) Genetic research ethics: A careful examination of the existing legal and ethical norms is crucial when conducting genetic research with families and with large populations residing in different states, as states differ in their legal requirements with respect to protection of individual genetic information; 2) Potential applications: Although most experts interviewed think that genetic research on smoking is more likely to assist in smoking cessation, other scenarios should not be overlooked in proactive ethical analyses. For example, the recent patenting of a nicotine vaccine could provide impetus for developing targeted preventive programs based on genetic testing of at-risk children; 3) Impact of genetic information: Preliminary results from genetic research suggest that genes involved in smoking are also associated with vulnerabilities to other addictive disorders, to certain psychological problems like anxiety and depression, and to some specific personality traits. Genetic testing for smoking may thus reveal clinically relevant but sensitive information. This constitutes a psychosocial risk that will need to be addressed in the informed consent process and, more broadly, in policies guiding the integration of genetic technologies to innovative strategies to reduce tobacco use.

Significance: The insights gained through genetic research on smoking will undoubtedly affect tobacco control strategies. Translating the results of genetic research into preventive interventions or smoking cessation programs will require the resolution of a host of complex ethical, legal, social, and policy issues. By beginning now to delineate and address these issues, there is an opportunity to consider possible policy approaches, rather than simply reacting as the science unfolds.