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A Family-Centered Model for Sharing Genetic Risk

Published online by Cambridge University Press:  01 January 2021

Mary B. Daly
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Extract

The successes of the Human Genome Project and the continuing advances of DNA technology have ushered in a new era of genomic science. Investigators around the world are using genomic technologies to advance our fundamental understanding of biologic and physiologic mechanisms in humans and other species. The ability to sequence the entire human genome exponentially expands our ability to identify the contribution of genetic variation to disease risk and other phenotypic differences within the population. Information derived from this research has the potential to contribute to disease prevention, disease prediction, and personalized treatment. These scientific advances, however, raise several ethical, legal, and social challenges. Many of these challenges, including personal and societal benefits and risks, and privacy and confidentiality, are mirrored in the current professional and public debate about the perceived conflict between personal autonomy, privacy, and confidentiality, and the potential value of sharing genomic information within the family.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 43 , Issue 3 , Autumn 2015 , pp. 545 - 551
Copyright
Copyright © American Society of Law, Medicine and Ethics 2015

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References

Biesecker, L. G. et al. , “The ClinSeq Project: Piloting Large-Scale Genome Sequencing for Research in Genomic Medicine,” Genome Research 19, no. 9 (2009): 1665–1674.CrossRefGoogle Scholar
Dondorp, W. J. de Wert, G. M., “The Thousand-Dollar Genome: An Ethical Exploration,” European Journal of Human Genetics 21, Supp. 1 (2013): S6–S26.CrossRefGoogle Scholar
Stoffel, E. M. et al. , “Sharing Genetic Test Results in Lynch Syndrome: Communication with Close and Distant Relatives,” Clinical Gastroenterology and Hepatology 6, no. 3 (2008): 333–338.CrossRefGoogle Scholar
Koehly, L. M. et al. , “A Social Network Analysis of Communication about Hereditary Nonpolyposis Colorectal Cancer Genetic Testing and Family Functioning,” Cancer Epidemiology, Biomarkers & Prevention 12, no. 4 (2003): 304–313.Google Scholar
Montgomery, S. V. et al. , “Preparing Individuals to Communicate Genetic Test Results to Their Relatives: Report of a Randomized Control Trial,” Familial Cancer 12, no. 3 (2013): 537–546.CrossRefGoogle Scholar
Gaff, C. L. et al. , “Process and Outcome in Communication of Genetic Information within Families: A Systematic Review,” European Journal of Human Genetics 15, no. 10 (2007): 999–1011.CrossRefGoogle Scholar
McDaniel, S. H. et al. , “Psychosocial Interventions with Patients and Families Coping with Genetic Conditions,” in Miller, S. M. McDaniel, S. H. Rolland, J. S. Feethan, S., eds., Individuals, Families & the New Era of Genetics: Biopsychosocial Perspectives (New York: Norton Publications, 2006): 173–196.Google Scholar
Williams, J. K. et al. , “Challenges in Evaluating Next-Generation Sequence Data for Clinical Decisions,” Nursing Outlook 63, no. 1 (2015): 48–50.CrossRefGoogle Scholar
Rolland, J. S. Williams, J. K., “Toward a Biopsychosocial Model for 21st-Century Genetics,” Family Process 44, no. 1 (2005): 3–24.Google Scholar
Ballard-Reisch, D. Letner, J. A., “Centering Families in Cancer Communication Research: Acknowledging the Impact of Support, Culture and Process on Client/Provider Communication in Cancer Management,” Patient Education and Counseling 50, no. 1 (2003): 61–66.Google Scholar
Hudson, P. et al. , “Family Meetings in Palliative Care: Multi-disciplinary Clinical Practice,” BMC Palliative Care 7, no. 12 (2008): 1–12.Google Scholar
Powazki, R. D., “The Family Conference in Oncology: Benefits for the Patient, Family, and Physician,” Seminars in Oncology 38, no. 3 (2011): 407–412.CrossRefGoogle Scholar
Adams, E. et al. , “The Information Needs of Partners and Family Members of Cancer Patients: A Systematic Literature Review,” Patient Education and Counseling 77, no. 2 (2009): 179–186.Google Scholar
Northouse, L. L. et al. , “The Impact of Caregiving on the Psychological Well-Being of Family Caregivers and Cancer Patients,” Seminars in Oncology Nursing 28, no.4 (2012): 236–245.CrossRefGoogle Scholar
Song, L. et al. , “Study of Dyadic Communication in Couples Managing Prostate Cancer: A Longitudinal Perspective,” Psych-Oncology 21, no. 1 (2012): 72–81.CrossRefGoogle Scholar
Coyne, E. et al. , “Exploration of the Family's Role and Strengths after a Young Woman Is Diagnosed with Breast Cancer: Views of Women and Their Families,” European Journal of Oncology Nursing 16, no. 2 (2012): 124–130.CrossRefGoogle Scholar
Humpel, N. et al. , “The Impact of a Cancer Diagnosis on the Health Behaviors of Cancer Survivors and Their Family and Friends,” Support Care Cancer 15, no. 6 (2007): 621–630.CrossRefGoogle Scholar
Demark-Wahnefried, W. et al. , “Riding the Crest of the Teachable Moment: Promoting Long-Term Health after the Diagnosis of Cancer,” Journal of Clinical Oncology 23, no. 24 (2005): 5814–5830.CrossRefGoogle Scholar
Rolland, J. S., “Cancer and the Family: An Integrative Model,” Cancer 104, Supp. 11 (2005): 2584–2595.CrossRefGoogle Scholar
Id.Google Scholar
Hamilton, R. J. et al. , “Disclosing Genetic Test Results to Family Members,” Journal of Nursing Scholarship 37, no. 1 (2005): 18–24.Google Scholar
See Rolland, Williams, , supra note 9.Google Scholar
Rolland, J. S., “Living with Anticipatory Loss in the New Era of Genetics: A Life Cycle Perspective,” in Individual and Families in the New Era of Genetics: Biopsychosocial Perspectives (New York/London: W.W. Norton & Co., 2006): At 213–236.Google Scholar
See Rolland, Williams, , supra note 9.Google Scholar
Hallowell, N. et al. , “The Responses of Research Participants and Their Next of Kin to Receiving Feedback of Genetic Test Results Following Participation in the Australian Ovarian Cancer Study,” Genetics in Medicine 15, no. 6 (2013): 458–465.Google Scholar
See Rolland, , supra note 19.Google Scholar
See Rolland, Williams, , supra note 9.Google Scholar
Boehmer, U. Clark, J. A. “Married Couples' Perspectives on Prostate Cancer Diagnosis and Treatment Decision-Making,” Psycho-Oncology 10, no. 2 (2001): 147–155.CrossRefGoogle Scholar
See Adams, et al. , supra note 13.Google Scholar
Chan, H. M., “Sharing Death and Dying: Advance Directives, Autonomy and the Family,” Bioethics 18, no. 2 (2004): 87–103.19.CrossRefGoogle Scholar
Hockley, J., “Communicating with the Patient and Family,” Acta Oncologica 39, no. 8 (2000): 905–910.CrossRefGoogle Scholar
See Hamilton, et al. , supra note 21.Google Scholar
Hamilton, R. et al. , “Living with Genetic Test Results for Hereditary Breast and Ovarian Cancer,” Journal of Nursing Scholarship 41, no. 3 (2009): 276–283.CrossRefGoogle Scholar
See Rolland, supra note 19.Google Scholar
Wilson, B. J., “Family Communication about Genetic Risk: The Little That Is Known,” Community Genetics 7, no. 1 (2004): 15–24.Google Scholar
Van Oostrom, I. et al. , “A Family System Characteristics and Psychological Adjustment to Cancer Susceptibility Genetic Testing: A Prospective Study,” Clinical Genetics 71, no. 1 (2007): 35–42.CrossRefGoogle Scholar
Barclay, J. S. et al. , “Communication Strategies and Cultural Issues in the Delivery of Bad News,” Journal of Palliative Medicine 10, no. 4 (2007): 958–977.CrossRefGoogle Scholar
See McDaniel, et al. , supra note 7.Google Scholar
See Wilson, et al. , supra note 35.Google Scholar
See McDaniel, et al. , supra note 7.Google Scholar
Id.Google Scholar
See Hamilton, et al. , supra note 21.Google Scholar