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01-06-2013

Ethics in Prevention Science Involving Genetic Testing

Authors: Celia B. Fisher, Erika L. Harrington McCarthy

Published in: Prevention Science | Issue 3/2013

Abstract

The Human Genome Project and rapid technological advances in genomics have begun to enrich prevention science’s contributions to understanding the role of genetic factors in the etiology, onset and escalation of mental disorders, allowing for more precise descriptions of the interplay between genetic and non-genetic influences. Understanding of ethical challenges associated with the integration of genetic data into prevention science has not kept pace with the rapid increase in the collection and storage of genetic data and dissemination of research results. This article discusses ethical issues associated with (1) decisions to withhold or disclose personal genetic information to participants; (2) implications of recruitment and data collection methods that may reveal genetic information of family members; and the (3) nature and timing of informed consent. These issues are presented within the contexts of adult and pediatric research, longitudinal studies, and use of biobanks for storage of genetic materials. Recommendations for research ethics decision-making are provided. The article concludes with a section on justice and research burdens and the unique ethical responsibilities of prevention scientists to ensure the new genomic science protects the informational rights of participants, their families and communities.

Annas, G. J., Glantz, L. H., & Roche, P. A. (1995). Drafting the Genetic Privacy Act: Science, policy, and practical considerations. The Journal of Law, Medicine & Ethics, 23, 360–366.CrossRef

Belsky, J., & Pluess, M. (2009). Beyond diathesis stress: Differential susceptibility to environmental influences. Psychological Bulletin, 135, 885–908.PubMedCrossRef

Beskow, L. M., & Burke, W. (2009). Ethical issues in genetic epidemiology. In S. S. Coughlin, T. L. Beachamp, & D. L. Weed (Eds.), Ethics and epidemiology (2nd ed., pp. 182–203). New York: Oxford University Press.CrossRef

Bioethics Advisory Committee. (2005). Genetic testing and genetic research. Singapore: The Bioethics Advisory Committee. Retrieved from http://www.bioethics-singapore.org/.

Brody, G. H., Chen, Y., Beach, S. R. H., Philibert, R. A., & Kogan, S. M. (2009). Participation in a family-centered prevention program decreases genetic risk for adolescents’ risky behaviors. Pediatrics, 124, 911–917.PubMedCrossRef

Canadian Paediatric Society. (2003). Guidelines for genetic testing of healthy children. Journal Paediatric Child Health, 8, 42–45.

Collins, F. S., Green, E. D., Guttmacher, A. E., & Guyer, M. S. (2003). A vision for the future of genomics research. Nature, 422, 835–847.PubMedCrossRef

Condit, C. M. (2009). Public understandings of genetics and health. Clinical Genetics, 77, 1–9.CrossRef

Conner, B. T., Hellemann, G. S., Ritchie, T. L., & Noble, E. P. (2010). Genetic, personality, and environmental predictors of drug use in adolescents. Journal of Substance Abuse Treatment, 38, 178–190.PubMedCrossRef

Cooper, Z. N., Nelson, R. M., & Ross, L. F. (2006). Informed consent for genetic research involving pleiotropic genes: An empirical study of ApoE research. IRB: Ethics & Human Research, 28, 1–11.

Department of Health and Human Services. (2009). Title 45 Public Welfare, Part 46, Code of Federal Regulations: Protection of Human Subjects. Washington, DC: Government Printing Office. Retrieved from http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html.

Dunn, E. C., Uddin, M., Subramanian, S. V., Smoller, J. W., Galea, S., & Koenen, K. C. (2011). Gene-environment interaction (GxE) research in youth depression: A systematic review with recommendations for future research. Journal of Child Psychology and Psychiatry, 52, 1223–1238.PubMedCrossRef

Duster, T. (2005). Race and reification in science. Science, 307, 1050–1051.PubMedCrossRef

Fisher, C. B. (1999). Relational ethics and research with vulnerable populations. In Reports on research involving persons with mental disorders that may affect decision-making capacity (Vol. 2, pp. 29–49). Commissioned papers by the National Bioethics Advisory Commission. Rockville, MD: National Bioethics Advisory Commission. Retrieved from http://bioethics.georgetown.edu/nbac/capacity/volumeii.pdf.

Fisher, C. B. (2003). A goodness-of-fit ethic for child assent to nonbeneficial research. The American Journal of Bioethics, 3, 27–28.PubMedCrossRef

Fisher, C. B. (2006a). Privacy and ethics in pediatric environmental health research—Part I: Genetic and prenatal testing. Environmental Health Perspectives, 114, 1617–1621.PubMedCrossRef

Fisher, C. B. (2006b). Privacy and ethics in pediatric environmental health research—Part II: Protecting families and communities. Environmental Health Perspectives, 114, 1622–1625.PubMedCrossRef

Fisher, C. B., & Ragsdale, K. (2006). A goodness-of-fit ethics for multicultural research. In J. Trimble & C. B. Fisher (Eds.), The handbook of ethical research with ethnocultural populations and communities (pp. 3–26). Thousand Oaks, CA: Sage.

Fisher, C. B., & Wallace, S. A. (2000). Through the community looking glass: Re-evaluating the ethical and policy implications of research on adolescent risk and psychopathology. Ethics & Behavior, 10, 99–118.CrossRef

Fisher, C. B., Busch, N. A., Brown, J. L., & Jopp, D. S. (2012). Applied developmental science, social justice and socio-political wellbeing. Applied Developmental Science, 16, 1–10.CrossRef

Fisher, C. B., Hoagwood, K., Boyce, C., Duster, T., Frank, D. A., Grisso, T., Macklin, R., Levine, R. J., Spencer, M. B., Takanishi, R., Trimble, J. E., & Zayas, L. H. (2002). Research ethics for mental health science involving ethnic minority children and youth. American Psychologist, 57, 1024–1040.PubMedCrossRef

Fisher, C. B., Hoagwood, K., & Jensen, P. (1996). Casebook on ethical issues in research with children and adolescents with mental disorders. In K. Hoagwood, P. Jensen, & C. B. Fisher (Eds.), Ethical issues in research with children and adolescents with mental disorders (pp. 135–238). Hillsdale, NJ: Erlbaum.

Fisher, C. B., Jackson, J., & Villarruel, F. (1997). The study of African American and Latin American children and youth. In William Damon (Series Ed.) & R. M. Lerner (Vol. Ed.), Handbook of Child Psychology: Vol. 1. Theoretical models of human development (5th ed., pp. 1145–1207). New York: Wiley.

Frazzetto, G., Di Lorenzo, G., Carola, V., Proietti, L., Sokolowska, E., Siracusano, A., …Troisi, A. (2007). Early trauma and increased risk for physical aggression: The moderating role of MAOA. PLoS One, 2, e486. doi:10.1371/journal.pone.0000486.

Grandjean, P., & Sorsa, M. (1996). Ethical aspects of genetic predisposition to environmentally-related disease. Science of the Total Environment, 184, 37–43.PubMedCrossRef

Hansson, M. G., & Maschke, K. J. (2009). Biobanks: Questioning distinctions. Science, 326, 797–799.PubMedCrossRef

Health Insurance Portability and Accountability Act of 1996 (HIPAA). (1996). Pub. L. No. 104–191, 110 Stat. 1936.

Henderson, G. E. (2008). Introducing social and ethical perspectives on gene-environment. Sociological Methods & Research, 37, 251–276.CrossRef

Hill, S. Y., Shen, S., Zezza, N., Hoffman, E. K., Perlin, M., & Allan, W. (2004). A genome wide search for alcoholism susceptibility genes. American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics, 128B, 102–113.CrossRef

Kendler, K. S. (2005). “A gene for…”: The nature of gene action in psychiatric disorders. The American Journal of Psychiatry, 162, 1243–1252.PubMedCrossRef

Kim-Cohen, J., Caspi, A., Taylor, A., Williams, B., Newcombe, R., Craig, I. W., & Moffitt, T. E. (2006). MAOA, maltreatment, and gene-environment interaction predicting children’s mental health: New evidence and a meta-analysis. Molecular Psychiatry, 11, 903–913.PubMedCrossRef

Knoppers, B., Joly, Y., Simard, J., & Durocher, F. (2006). The emergence of an ethical duty to disclose genetic research results: International perspectives. European Journal of Human Genetics, 14, 1170–1178.PubMedCrossRef

Kuo, P. H., Neale, M. C., Riley, B. P., Patterson, D. G., Walsh, D., Prescott, C. A., & Kendler, K. S. (2007). A genome-wide linkage analysis for personality trait neuroticism in the Irish affected sib-pair study of alcohol dependence. American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics, 144B, 463–468.CrossRef

Lippman, A. (1991). Prenatal genetic testing and screening: Constructing needs and reinforcing inequities. American Journal of Law & Medicine, 17, 15–50.

Masty, J., & Fisher, C. B. (2008). A goodness of fit approach to parent permission and child assent in pediatric intervention research. Ethics & Behavior, 13, 139–160.CrossRef

Mello, M. M., & Wolf, L. D. (2010). The Havasupai Indian Tribe case – Lessons for research involving stored biologic samples. The New England Journal of Medicine, 363, 204–207.PubMedCrossRef

Murphy, J., Scott, J., Kaufman, D., Geller, G., LeRoy, L., & Hudson, K. (2008). Public expectations for return of results from large-cohort genetic research. The American Journal of Bioethics, 8, 36–43.PubMedCrossRef

National Institutes of Health. (2008a). Policy for sharing of data obtained in NIH supported or conducted genome-wide association studies. Retrieved from http://grants.nih.gov/grants/guide/notice-files/NOT-OD-07-088.html.

National Institutes of Health. (2008b). Genome-wide association studies: NIH Points to Consider for IRBs and Institutions. Retrieved from http://grants.nih.gov/grants/gwas/gwas_ptc.pdf.

O’Connell, M., Boat, T. F., & Warner, K. (2009). Preventing mental, emotional, and behavioral disorders among young people: Progress and possibilities. Washington, DC: National Academies Press.

Office of Human Research Protections. (2009). Guidance on the Genetics Information Nondiscrimination Act: Implications for investigators and Institutional Review Boards. Retrieved from http://www.hhs.gov/ohrp/policy/gina.html.

Ossorio, P. N., & Duster, T. (2005). Race and genetics: Controversies in biomedical, behavioral, and forensic sciences. American Psychologist, 60, 115–128.PubMedCrossRef

Plomin, R., & Davis, O. S. (2009). The future of genetics in psychology and psychiatry: Microarrays, genome-wode association, and non-coding. Journal of Child Psychology and Psychiatry, 50, 63–71.PubMedCrossRef

Ravitsky, V., & Wilfond, B. S. (2006). Disclosing individual genetic results to research participants. The American Journal of Bioethics, 6, 8–17.PubMedCrossRef

Risch, N., Herrell, R., Lehner, T., Kung-Yee, L., Eaves, L., Hoh, J., … Merikangas, K. R. (2009). Interaction between the serotonin transporter gene (5-HTTLPR), stressful life events, and risk of depression: A meta-analysis. Journal of the American Medical Association, 301, 2462–2471.

Ross, L. F. (2002). Predictive genetic testing for conditions that present in childhood. z, 12, 225–244.

Rutter, M., Moffitt, T. E., & Caspi, A. (2006). Gene-environment interplay and psychopathology: Multiple varieties but real effects. Journal of Child Psychology and Psychiatry, 47, 226–261.PubMedCrossRef

Secretary’s Advisory Committee on Human Research Protections. (2010). FAQs, Terms and Recommendations on Informed Consent and Research Use of Biospecimens. Retrieved from http://www.hhs.gov/ohrp/sachrp/commsec/attachmentdfaq'stermsandrecommendations.pdf.

Sonuga-Barke, E., Oades, R. D., Psychogiou, L., Chen, W., Franke, B., Buitelaar, J., … Faraone, S. V. (2009). Dopamine and serotonin transporter genotypes moderate sensitivity to maternal expressed emotion: The case of conduct and emotional problems in Attention Deficit/ Hyperactivity Disorder. Journal of Child Psychology and Psychiatry, 50, 1052–1063.

Svendsen, M. N., & Koch, L. (2006). Genetics and prevention: A policy in the making. New Genetics & Society, 25, 51–68.CrossRef

United Nations Educational, Scientific and Cultural Organization. (1997). Universal declaration on the human genome and human rights. Paris: UNESCO. Retrieved from http://www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/human-genome-and-human-rights.

Wilfond, B., & Ross, L. F. (2009). From genetics to genomics: Ethics, policy, and parental decision-making. Journal of Pediatric Psychology, 34, 639–647.PubMedCrossRef

Wolf, L. E., Bouley, T. A., & McCulloch, C. E. (2010). Genetic research with stored biological materials: Ethics and practice. IRB: Ethics & Human Research, 32, 7–18.

World Health Organization. (2003). Genetic databases: Assessing the benefits and the impact on human and patient rights. Geneva: World Health Organization. Retrieved from http://www.law.ed.ac.uk/ahrb/publications/online/whofinalreport.doc.

Title: Ethics in Prevention Science Involving Genetic Testing
Authors: Celia B. Fisher
Erika L. Harrington McCarthy
Publication date: 01-06-2013
Publisher: Springer US
Published in: Prevention Science / Issue 3/2013
Print ISSN: 1389-4986
Electronic ISSN: 1573-6695
DOI: https://doi.org/10.1007/s11121-012-0318-x

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