scholarly journals To Tell or Not to Tell: The Ethics and Law of Disclosing Health-Related Genetic Information to Family Members

2018 ◽  
Vol 11 (4) ◽  
pp. 68-78
Author(s):  
Robert Chapman ◽  
Johanna Devereux ◽  
Victoria Nanau ◽  
Vanessa Smereczynska ◽  
Daria Matsepuro ◽  
...  
Keyword(s):  
Genetic Information ◽  
Family Members ◽  
Health Related

Supporting disclosure of genetic information to family members: professional practice and timelines in cancer genetics

2017 ◽  
Vol 16 (3) ◽  
pp. 447-457 ◽  
Author(s):  
Benjamin Derbez ◽  
Antoine de Pauw ◽  
Dominique Stoppa-Lyonnet ◽  
Sandrine de Montgolfier
Keyword(s):  
Professional Practice ◽  
Genetic Information ◽  
Cancer Genetics ◽  
Family Members

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.

Disclosing genetic information to family members without consent: Five Australian case studies

2020 ◽  
Vol 63 (11) ◽  
pp. 104035
Author(s):  
Jane Tiller ◽  
Gemma Bilkey ◽  
Rebecca Macintosh ◽  
Sarah O'Sullivan ◽  
Stephanie Groube ◽  
...  
Keyword(s):  
Case Studies ◽  
Genetic Information ◽  
Family Members ◽  
Australian Case

Family Health Behaviors

2019 ◽  
Vol 109 (9) ◽  
pp. 3162-3191 ◽  
Author(s):  
Itzik Fadlon ◽  
Torben Heien Nielsen
Keyword(s):  
Health Behaviors ◽  
Administrative Data ◽  
Preventive Care ◽  
Adult Children ◽  
Family Members ◽  
Family Health ◽  
Health Shocks ◽  
Health Related Behaviors ◽  
The Future ◽  
Health Related

We study how health behaviors are shaped through family spillovers. We leverage administrative data to identify the effects of health shocks on family members’ consumption of preventive care and health-related behaviors, constructing counterfactuals for affected households using households that experience the same shock but a few years in the future. Spouses and adult children immediately improve their health behaviors and their responses are both significant and persistent. These spillovers are far-reaching as they cascade even to coworkers. While some responses are consistent with learning information about one’s own health, the evidence points to salience as a major operative explanation. (JEL D15, D83, I12, J12)

scholarly journals Striking a balance: resolving conflicts between the duty of confidentiality and duties to third parties in genetics

Legal Studies ◽  
2018 ◽  
Vol 38 (4) ◽  
pp. 645-665
Author(s):  
Naomi Hawkins ◽  
Timon Hughes-Davies
Keyword(s):  
Family Member ◽  
Genetic Information ◽  
Family Members ◽  
Third Parties ◽  
Third Party ◽  
Legal Rights ◽  
Duty Of Care ◽  
Healthcare Practitioner ◽  
Party Family

AbstractGenetic information is relevant not only to the patient, but also to their family. Where a patient refuses to share that information with family members, then their legal rights may conflict. This paper focuses on that conflict between the rights of individuals and the rights of third parties. We first examine the nature of the duty of confidence as it applies in these circumstances, and the extent to which it can appropriately accommodate the familial nature of genetic information. We then consider the situations in which a healthcare practitioner might owe a third-party family member a tortious duty of care. We conclude that in most cases, there will be no duty owed to third parties, but that in certain limited circumstances, a duty of care should arise.

scholarly journals Communicating genetic information to family members: analysis of consent forms for diagnostic genomic sequencing

2020 ◽  
Vol 28 (9) ◽  
pp. 1160-1167
Author(s):  
Amicia Phillips ◽  
Emilia Niemiec ◽  
Heidi Carmen Howard ◽  
Kalliopi Kagkelari ◽  
Pascal Borry ◽  
...  
Keyword(s):  
Genetic Information ◽  
Family Members ◽  
Genomic Sequencing ◽  
Consent Forms

Genetic Knowledge and Third-Party Interests

1999 ◽  
Vol 8 (3) ◽  
pp. 386-392 ◽  
Author(s):  
ELISABETH BOETZKES
Keyword(s):  
Genetic Information ◽  
Family Members ◽  
Reproductive Technologies ◽  
Third Party ◽  
Insurance Companies ◽  
Royal Commission ◽  
Dna Testing ◽  
Reasonable Person ◽  
Reasonable Person Standard ◽  
Professional Guidelines

Recent discussions of genetic information have highlighted the need for ethical disclosure guidelines. For instance, the (Canadian) Royal Commission on New Reproductive Technologies points out the range of third-party interests in genetic information and the lack of clear ethical and professional guidelines governing its dissemination. Among the more worrying interests are those of insurance companies and prospective employers. However, also worrisome is the problem of negotiating the first-party interest in privacy (from which the professional obligation of confidentiality arises) and strong third-party claims from family members. The survey by Knoppers and Laberge of consent forms currently used in DNA testing in Canada shows that fewer than half mention access by family members, and only three out of 20 alert subjects to the possibility of finding nonpaternity. Both the Royal Commission and the Knoppers research group recommend integrated, national consent standards, with the Knoppers group explicitly approving a “reasonable person” standard of disclosure. While endorsing the call for integrated consent guidelines, in this paper I intend to raise some doubts about the adequacy of the reasonable person standard in light of gender differences in reproductive burden and risk perception.

Corrleation of health-related quality of life (HRQL) of cancer patients and the mental component parameters of their family members

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. e20619-e20619
Author(s):  
I. Vrettos ◽  
A. Papadopoulos ◽  
K. Kamposioras ◽  
D. Charitos ◽  
G. Giannopoulos ◽  
...  
Keyword(s):  
Mental Health ◽  
Social Functioning ◽  
Cancer Patients ◽  
General Health ◽  
Bodily Pain ◽  
Family Members ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
Highly Correlated

e20619 Background: It is widely experienced that health-related quality of life (HRQL) is greatly influenced in the family members of cancer patients. The aim of this study was to find the correlation of the HRQL parameters in cancer patients with the main mental component parameters of patients’ relatives. Methods: 122 cancer patients undergoing chemotherapy in our department (49 men and 73 women) of mean age 56.6 ±15.4 1SD and their 122 relatives that accompanied them (45 men and 77 women) of mean age 48.3 ±14.5 completed the validated SF-36 health survey by personal interview. The SF-36 health survey summarizes the functional health status and general health into eight scales with higher scores (0–100 range) reflecting better-perceived health. In this study, physical functioning (PF), role physical (RP), bodily pain (BP), general health perception (GH), vitality (VT), social functioning (SF), role emotional (RE), and mental health (MH) of the patients were correlated with the SF, RE, MH of their family members using the Spearman's test. Data analysis was performed with SPSS version 13.0 and correlations were considered statistically significant when p<0.05. Results: Table 1 summarizes the results of our study. Social Functioning and Mental Health of family members are highly correlated with the HRQL parameters of cancer patients. The RE does not seem to be affected. Conclusions: HRQL of cancer patients undergoing chemotherapy is highly correlated with the SF and the MH of their relatives. This observation highlights the need to develop more oriented supportive programs for both the patients and their family memebers. Abbreviations: PF = Physical Functioning, RP = Role Physical, BP = Bodily Pain, GH = General Health, VT = Vitality, SF = Social Functioning, RE = Role Emotional, MH = Mental Health; NS=Not Significant. * = 0.05. ** = 0.01. [Table: see text] No significant financial relationships to disclose.

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