Skip to main content Accessibility help
×
Hostname: page-component-76fb5796d-skm99 Total loading time: 0 Render date: 2024-04-27T16:55:17.563Z Has data issue: false hasContentIssue false

Chapter 21 - Ethical Issues in Clinical Genetics

from Section 2 - Consultation

Published online by Cambridge University Press:  17 February 2022

D. Micah Hester
Affiliation:
University of Arkansas for Medical Sciences, College of Medicine
Toby L. Schonfeld
Affiliation:
National Center for Ethics in Health Care, US Department of Veterans Affairs
Get access

Summary

Ethical issues in genetics are studied and addressed under the rubric of what is commonly referred to as “ELSI”: the Ethical, Legal, and Social Implications of genetics. In this chapter, we will focus on a subset of ELSI issues in genetic medicine that surround common applications of genetics in general clinical settings. Common ethical issues arising for healthcare ethics committee (HEC) members from genetic technology gravitate toward concerns to assure that genetic testing results are utilized in ethically appropriate ways to identify risk, and develop treatment or health maintenance plans consistent with patient values. This will most commonly take the general form of: (1) protecting against harms that are motivated by unreliable results; (2) promoting informed consent by addressing misunderstanding, misapplication, or unwarranted reaction to genetic testing results on the part of either patients, their families, or members of the healthcare team; or (3) assuring that patient privacy is maintained and applied in appropriate circumstances.

Type
Chapter
Information
Publisher: Cambridge University Press
Print publication year: 2022

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

AAP Committee on Bioethics, Committee on Genetics, and the ACMG Social, Ethical and Legal Issues Committee. (2013). Ethical and policy issues in genetic testing and screening of children. Pediatrics, 131(3): 620622.CrossRefGoogle Scholar
Centers for Disease Control and Prevention. (n.d.). Hereditary breast and ovarian cancer: BRCA 1 and BRCA 2. www.cdc.gov/genomics/disease/breast_ovarian_cancer/genes_hboc.htm (accessed September 1, 2020).Google Scholar
Kalia, SS, Adelman, K, Bale, SJ, et al. (2017). Recommendations for reporting of secondary findings in clinical exome and genome sequencing, 2016 update (ACMG SF v2.0): A policy statement of the American College of Medical Genetics and Genomics. Genetics in Medicine, 19(2): 249255.CrossRefGoogle ScholarPubMed
May, T (2009). Bioethics in a Liberal Society. Baltimore: Johns Hopkins University Press.Google Scholar
May, T (2012). Re-thinking clinical risk for DNA sequencing. American Journal of Bioethics, 12(10): 2426.Google Scholar
May, T (2015). On the justifiability of ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Journal of Law, Medicine and Ethics, 43(1): 134142.Google Scholar
May, T, Fullerton, SM (2021). Ethical considerations in the use of direct-to-consumer genetic testing for adopted persons. Adoption Quarterly, 24(1): 89100.CrossRefGoogle Scholar
May, T, Spellecy, R (2006). Autonomy, full information, and genetic ignorance in reproductive medicine. Monist, 6(1): 466481.CrossRefGoogle Scholar
Raz, J (1990). Practical Reason and Norms. Princeton University Press.Google Scholar
Richards, S, Aziz, N, Bale, S, et al. (2015). Standards and guidelines for the interpretation of sequence variants: A joint consensus recommendation of the American College of Medical Genetics and Genomics and the Association for Molecular Pathology. Genetics in Medicine, 17(5): 405424.CrossRefGoogle ScholarPubMed
Ross, LF, Saal, HM, Davis, KL, et al. (2013). Technical report: Ethical and policy issues in genetic testing and screening of children. Genetics in Medicine, 15(3): 234245.Google Scholar
Roberts, JS, Robinson, JO, Diamond, PM, et al. (2018). Patient understanding of, satisfaction with, and perceived utility of whole-genome sequencing: Findings from the MedSeq Project. Genetics in Medicine, 20(9): 10691076.CrossRefGoogle ScholarPubMed
Tandy-Connor, S, Guiltinan, J, Krempeley, K, et al. (2018). False-positive results released by direct-to-consumer genetic tests highlight the importance of clinical confirmation testing for appropriate patient care. Genetics in Medicine, 20(12): 15151521.Google Scholar
Welch, HG, Burke, W (2015, April 27). Op-ed: Why whole-genome testing hurts more than it helps. Los Angeles Times. www.latimes.com/opinion/op-ed/la-oe-welch-problems-predictive-medicine-20150428-story.htmlGoogle Scholar
Wolf, SM, Annas, GJ, Elias, S (2013). Respecting patient autonomy in clinical genomics: New recommendations on incidental findings go astray. Science, 340(6136): 10491050.CrossRefGoogle Scholar

Save book to Kindle

To save this book to your Kindle, first ensure coreplatform@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×