Ethical Issues in Clinical Genetics and Genomics

2018 ◽  
pp. 135-146
Author(s):  
Henry T. Greely
1992 ◽  
Vol 20 (4) ◽  
pp. 244
Author(s):  
Peter N Campbell

2019 ◽  
Vol 104 (2) ◽  
pp. 193-196 ◽  
Author(s):  
William M.P. Klein ◽  
Colleen M. McBride ◽  
Caitlin G. Allen ◽  
Elva M. Arredondo ◽  
Cinnamon S. Bloss ◽  
...  

2016 ◽  
Vol 34 (1) ◽  
pp. 119-154 ◽  
Author(s):  
Karen J. Whitt ◽  
McKenna Hughes ◽  
Elizabeth (Betsy) S. Hopkins ◽  
Ann Maradiegue

Aim: The purpose of this integrative review is to critically analyze the research literature regarding ethical principles that surround the integration of genetics and genomics in primary care clinical practice. Background: Advanced practice nurses (APRNs) play an important role in the provision of primary care services, in the areas of obstetrics, pediatrics, family practice, and internal medicine. Advances in genetic and genomic science are infiltrating these day-to-day health-care systems and becoming an integral part of health-care delivery. It is imperative for primary care providers to understand the ethical, legal, and social implications of genetics and genomics. Methods: A comprehensive multistep search of CINAHL, MEDLINE, Academic Search Premier, PsycINFO, Web of Science, and Scopus databases was conducted to identify primary research articles published from 2003 to 2015 that evaluated ethical issues related to genetics and genomics in U. S. primary care practice. A sample of 26 primary research articles met the inclusion criteria. Whittemore and Knafl's (2005) revised framework for integrative reviews was used to guide the analysis and assess the quality of the studies. Key findings from the studies are discussed according to Beauchamp and Childress's (2009) ethical principles of autonomy, beneficence, nonmaleficence, and justice. Results: Research conducted to date is mainly qualitative and descriptive and the analysis revealed several ethical challenges to implementing genetics and genomics in primary care settings. Conclusion: The review suggests that there are several implications for research, education, and the development of primary care practice that support APRNs delivering genetic and genomic care while incorporating knowledge of ethical principles. More research needs to be conducted that evaluates the actual genetic/genomic ethical issues encountered by primary care providers.


2008 ◽  
Vol 17 (4) ◽  
pp. 361-372 ◽  
Author(s):  
KENNETH W. GOODMAN ◽  
ANITA CAVA

The intersection of ethics, computing, and genetics plots a space not yet adequately mapped, despite its importance, indeed, its rapidly growing importance. Its subdomains are well-enough known: “Genethics,” or the study of ethical issues in genetics and genomics, is part of core curricula everywhere. Ethics and computing is an established subfield. Computing and genetics—bioinformatics—has in little more than a decade progressed from subsubspecialty to the sine qua non of contemporary biomedical research, and it bids fair to transform clinical practice. We must prepare for the complete digitization of the genomes of individual patients and the storage of millions of these genomes in very large databases.


1994 ◽  
Vol 10 (4) ◽  
pp. 527-545 ◽  
Author(s):  
Hans Galjaard

AbstractClinical genetics services have become an integrated part of health care in nearly all European countries. The emphasis has been on postnatal cytogenetic, biochemical, and DNA diagnosis of congenital disorders, carrier detection, genetic counseling, and prenatal diagnosis. Use has been satisfactory, and very few ethical problems have arisen, apart from moral objections against abortion by minority groups. The progress of human gene mapping is associated with new perspectives in clinical genetics and will enable the identification of people at risk of major adult diseases. This prospect has caused some concern about psychosocial and ethical issues that are being dealt with in different ways in various postindustrial societies. In future decades, however, 95% of the world's population increase will occur in developing countries. In most of these countries, a low per capita income, female illiteracy, low rates of contraceptive use, teenage pregnancy, and religious and traditional cultural factors are major complications of implementing genetic services at a global level. There are, however, some exceptions, which are discussed.


Author(s):  
Amal Elfatih ◽  
Idris Mohammed ◽  
Doua Abdelrahman ◽  
Borbala Mifsud

The application of whole genome/exome sequencing technologies in clinical genetics and research has resulted in the discovery of incidental findings unrelated to the primary purpose of genetic testing. The American College of Medical Genetics and Genomics published guidelines for reporting pathogenic and likely pathogenic variants that are deemed to be medically actionable, which allowed us to learn about the epidemiology of incidental findings in different populations. However, consensus guidelines for variant reporting and classification are still lacking. We conducted a systematic literature review of incidental findings in whole genome/exome sequencing studies to obtain a comprehensive understanding of variable reporting and classification methods for variants that are deemed to be medically actionable across different populations. The review highlights the elements that demand further consideration or adjustment.


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