9. Genetic Information

Medical Law ◽  
2019 ◽  
pp. 470-505
Author(s):  
Emily Jackson
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Genetic Discrimination ◽  
Third Parties ◽  
Test Results ◽  
Genetic Privacy ◽  
Direct To Consumer ◽  
Genetic Test Results ◽  
Recent Developments ◽  
Dna Profiles

All books in this flagship series contain carefully selected substantial extracts from key cases, legislation, and academic debate, providing students with a stand-alone resource. This chapter examines the regulation of access to genetic information. It first discusses various third parties’ interests in genetic test results and DNA profiles, and the extent to which genetic privacy is protected by the law. The chapter then considers the issue of whether genetic discrimination should be treated in the same way as other illegitimate discriminatory practices and also discusses recent developments in the field of genetics, namely direct-to-consumer genetic testing and pharmacogenetics.

scholarly journals To Warn or Not to Warn? Genetic Information, Families, and Physician Liability

2020 ◽  
Vol 8 (1) ◽  
Author(s):  
Jennifer L Gold
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Third Party ◽  
Test Results ◽  
Physician Patient Relationship ◽  
Duty To Warn ◽  
Legal Obligations ◽  
Genetic Test Results ◽  
Physician Liability ◽  
Physician Patient

Genetic testing raises a number of legal issues. Physicians providing genetic testing may be faced with questions related to privacy, confidentiality, and the duty to warn. Because genetic information is by its very nature familial, genetic test results may have implications for others not privy to the particular physician-patient relationship. This can result in a legal and ethical quandary for the treating physician. This paper addresses questions with respect to genetic testing and the legal obligations of physicians. First, can a physician legally breach doctor-patient confidentiality to inform a family member of a genetic risk? Second, does the physician have a duty to warn the interested third party of that risk? And if the physician fails to warn that party, could s/he be found liable? These questions are addressed here in a comparative fashion, examining Canadian (and, where appropriate, American) common law as well as Quebec civil law. The paper concludes that physicians should be liable for the duty to warn in the context of genetic information only when the risk is serious, imminent, and avoidable.

scholarly journals Time to Get Serious about Privacy Policies: The Special Case of Genetic Privacy

2014 ◽  
Vol 42 (1) ◽  
pp. 1-32
Author(s):  
Dianne Nicol ◽  
Meredith Hagger ◽  
Nola Ries ◽  
Johnathon Liddicoat
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Personal Information ◽  
Genetic Privacy ◽  
Privacy Policies ◽  
Her Family ◽  
Current Regime ◽  
Direct To Consumer ◽  
Privacy Act ◽  
Special Case

Genetic information is widely recognised as being particularly sensitive personal information about an individual and his or her family. This article presents an analysis of the privacy policies of Australian companies that were offering direct-to-consumer genetic testing services in 2012–13. The results of this analysis indicate that many of these companies do not comply with the Privacy Act 1988 (Cth), and will need to significantly reassess their privacy policies now that significant new amendments to the Act have come into force. Whilst the Privacy Commissioner has increased powers under the new amendments, the extent to which these will mitigate the deficiencies of the current regime in relation to privacy practices of direct–to-consumer genetic testing companies remains unclear. Accordingly, it may be argued that a privacy code for the direct-to-consumer genetic testing industry would provide clearer standards. Alternatively it may be time to rethink whether a sui generis approach to protecting genetic information is warranted.

Genetic Counseling in the Genomic Era

2019 ◽  
pp. 187-200
Author(s):  
Barbara B. Biesecker ◽  
Kathryn F. Peters ◽  
Robert Resta
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Genome Sequencing ◽  
Genetic Information ◽  
Genetic Counselors ◽  
Counseling Skills ◽  
Test Results ◽  
Genetic Test Results ◽  
The Face

The nature and scope of genetic counseling is continuing to evolve in the face of the expanding application of new genetic testing technologies like exome and genome sequencing. This creates a new set of challenges for determining the role of genetic counselors and genetic counseling in the delivery of genetic services. Genetic counselors may shift from being gatekeepers to genetic testing to interpreters of complex genetic test results. While this may require learning new biomedical information, the application of basic counseling skills will continue to be critical to service delivery. While testing has become more sophisticated and complex, it still comes down to families and patients trying to integrate genetic information into their lives in meaningful ways. This has, on one level, not changed for at least the last half-century.

scholarly journals The Symptom Discounting Effect : What to Do When Negative Genetic Test Results Become Risk Factors for Alcohol Use Disorder

2021 ◽  
Author(s):  
woo-kyoung ahn ◽  
Annalise Perricone
Keyword(s):  
Genetic Testing ◽  
Alcohol Use ◽  
Alcohol Use Disorder ◽  
Genetic Test ◽  
Test Results ◽  
Markov Condition ◽  
Problematic Drinking ◽  
Direct To Consumer ◽  
Genetic Test Results ◽  
Testing Company

Abstract Most consumers of genetic testing for health conditions test negative, yet the psychological perils of this are hardly known. In three experiments (N=2,103) participants discounted repercussions of Alcohol Use Disorder (AUD), after learning or imagining that they were not genetically predisposed to AUD. Such discounting can lead people to avoid treatment and to feel safe to continue or even increase their drinking, ironically turning the negative genetic feedback into a risk factor for AUD. This misconception derives from not understanding the Causal Markov condition as applied to this case; once AUD symptoms are present, their ramifications remain the same regardless of whether genes or environments caused the symptoms. Educating participants about this principle mitigated the irrational discounting of threats of AUD, even among Individuals already engaging in problematic drinking, for whom the debriefing currently used by a direct-to-consumer genetic testing company was found to be ineffective in the current study.

scholarly journals Japanese insurers’ attitudes toward adverse selection and genetic discrimination: a questionnaire survey and interviews with employees about using genetic test results

2020 ◽  
Author(s):  
Hiroshi Iida ◽  
Kaori Muto
Keyword(s):  
Adverse Selection ◽  
Questionnaire Survey ◽  
Genetic Information ◽  
Genetic Test ◽  
Genetic Discrimination ◽  
Insurance Company ◽  
Test Results ◽  
The People ◽  
Genetic Test Results ◽  
Actuarial Fairness

AbstractSince the 1990s, insurance has been the primary field focused on the social disadvantages of using genetic test results because of the concerns related to adverse selection. Although life insurance is popular in Japan, Japan does not currently have any regulations on the use of genetic information and insurers have largely kept silent for decades. To reveal insurers’ attitudes on the topic, we conducted an anonymous questionnaire survey with 100 insurance company employees and recruited nine interviewees from the survey respondents. We found that genetic discrimination is not generally considered as a topic of human rights. We also found that insurers have uncertain fears and concerns about adverse selection in terms of actuarial fairness but not regarding profits. When it comes to preparing guidelines on the use of genetic information by Japanese insurers, we believe that public dialog and consultation are necessary to gain understanding of the people.

scholarly journals Genetic discrimination: emerging ethical challenges in the context of advancing technology

2019 ◽  
Author(s):  
Carolyn Riley Chapman ◽  
Kripa Sanjay Mehta ◽  
Brendan Parent ◽  
Arthur L Caplan
Keyword(s):  
Health Insurance ◽  
Genetic Testing ◽  
Genetic Information ◽  
Predictive Power ◽  
The United States ◽  
Legal Framework ◽  
Genetic Discrimination ◽  
Ethical Challenges ◽  
Health Related ◽  
Discrimination In Employment

Abstract Genetic testing is becoming more widespread, and its capabilities and predictive power are growing. In this paper, we evaluate the ethical justifications for and strength of the US legal framework that aims to protect patients, research participants, and consumers from genetic discrimination in employment and health insurance settings in the context of advancing genetic technology. The Genetic Information Nondiscrimination Act (GINA) and other laws prohibit genetic and other health-related discrimination in the United States, but these laws have significant limitations, and some provisions are under threat. If accuracy and predictive power increase, specific instances of use of genetic information by employers may indeed become ethically justifiable; however, any changes to laws would need to be adopted cautiously, if at all, given that people have consented to genetic testing with the expectation that there would be no genetic discrimination in employment or health insurance settings. However, if our society values access to healthcare for both the healthy and the sick, we should uphold strict and broad prohibitions against genetic and health-related discrimination in the context of health insurance, including employer-based health insurance. This is an extremely important but often overlooked consideration in the current US debate on healthcare.

scholarly journals Cases in Precision Medicine: When Patients Present With Direct-to-Consumer Genetic Test Results

2019 ◽  
Vol 170 (9) ◽  
pp. 643 ◽  
Author(s):  
Michael G. Artin ◽  
Deborah Stiles ◽  
Krzysztof Kiryluk ◽  
Wendy K. Chung
Keyword(s):  
Precision Medicine ◽  
Genetic Test ◽  
Test Results ◽  
Direct To Consumer ◽  
Genetic Test Results

scholarly journals Genetic Testing for Inherited Cardiovascular Diseases: A Scientific Statement From the American Heart Association

2020 ◽  
Vol 13 (4) ◽  
Author(s):  
Kiran Musunuru ◽  
Ray E. Hershberger ◽  
Sharlene M. Day ◽  
N. Jennifer Klinedinst ◽  
Andrew P. Landstrom ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Cardiovascular Diseases ◽  
Best Practices ◽  
Human Genetics ◽  
American Heart ◽  
Heart Association ◽  
Test Results ◽  
Lipid Disorders ◽  
Genetic Test Results ◽  
Scientific Statement

Advances in human genetics are improving the understanding of a variety of inherited cardiovascular diseases, including cardiomyopathies, arrhythmic disorders, vascular disorders, and lipid disorders such as familial hypercholesterolemia. However, not all cardiovascular practitioners are fully aware of the utility and potential pitfalls of incorporating genetic test results into the care of patients and their families. This statement summarizes current best practices with respect to genetic testing and its implications for the management of inherited cardiovascular diseases.

scholarly journals Direct-to-Consumer Genetic Testing Data Privacy: Key Concerns and Recommendations Based on Consumer Perspectives

2019 ◽  
Vol 9 (2) ◽  
pp. 25 ◽  
Author(s):  
Rachele M. Hendricks-Sturrup ◽  
Christine Y. Lu
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Data Privacy ◽  
Reading Levels ◽  
Consumer Privacy ◽  
Direct To Consumer ◽  
Consumer Concerns ◽  
Testing Data ◽  
Consumer Perspectives ◽  
Health Consumers

Direct-to-consumer genetic testing (DTC-GT) companies are engaging health consumers in unprecedented ways and leveraging the genetic information they collect to further engage health companies. This has produced controversy about DTC-GT consumer expectations, standards, and perceptions of privacy. In this commentary, we highlight recent events involving DTC-GT companies and controversy about privacy that followed those events and discuss recent studies that have explored DTC-GT consumer concerns about privacy. We discuss DTC-GT company standards of upholding consumer privacy and the general accessibility of DTC-GT company terms of use agreements and privacy policies that are written at reading levels above that of many consumers. We conclude that broader discussions and more research are needed to identify DTC-GT consumer concerns about and expectations of privacy. We anticipate that our recommendations will advance discussions on consumer privacy expectations and protections in an era of increasing engagement in DTC-GT.

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