Communication of Genetic Information within Families: The Case for Familial Comity

Davey, Angela; Newson, Ainsley J; O’Leary, Peter

doi:10.1007/s11673-006-9022-5

Cited by 11 publications

(10 citation statements)

References 17 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This suggests that counselors implicitly conceptualize genetic information as inescapably familial and therefore promote a co-ownership model of genetic information. The specific model of co-ownership of information in their accounts reflects the family comity (FC) model of coownership (Davey et al 2006).…”

Section: Family Comitymentioning

confidence: 99%

“…Family comity offers a way of conceiving genetic information in families that balances individualistic conceptions of autonomy--a person's right to hold views and make choices based on personal values and beliefs free from restricting influences (Beauchamp and Childress 2001)-and the rights of other family members to know their genetic risk of disease. Comity is considerate behavior towards others (Davey et al 2006); in the FC model, when a client enacts their personal autonomy to undergo genetic testing a counselor encourages him or her to take into consideration their obligation to other family members with regard to sharing information. This is a markedly relational element in that this kind of encouragement by the counselor promotes the relational autonomy of the client.…”

Section: Family Comitymentioning

confidence: 99%

“…A small number of counselors in this study described an authoritative relational approach to encourage genetic information disclosure. This approach, we suggest, represents the assertive enactment of the family comity co-ownership model of genetic information (Davey et al 2006). This approach was implemented in the rare cases of active non-disclosure and here these counselors took on an authoritative stance to ensure a client did not consent to genetic testing without fully appreciating the familial context of that decision.…”

Section: Authoritativementioning

confidence: 99%

“…Previous studies have suggested that HBOC clients disclose genetic information from a sense of familial responsibility, enacting a kind of relational autonomy (D'Agincourt-Canning 2006;Hallowell et al 2003)-the active consideration of one's obligations and responsibilities to others when making personal autonomous decisions (Bell and Bennett 2001). Davey et al (2006) note that relational elements may already inform genetic counselor practice, in so far as genetic counselors routinely encourage their clients to disclose genetic information to their families (as supported by studies above), thereby promoting the client's relational autonomy. Genetic counselors operating from a relational stance is further supported by current research in Australia focusing on the development of practical tools to facilitate information dissemination for BRCA1/2 families (Healey et al 2015).…”

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

A Relational Approach to Genetic Counseling for Hereditary Breast and Ovarian Cancer

Shepherd

Browne

Warwick

2016

Journal of Genetic Counseling

View full text Add to dashboard Cite

Ethical issues arise for genetic counselors when a client fails to disclose a genetic diagnosis of hereditary disease to family: they must consider the rights of the individual client to privacy and confidentiality as well as the rights of the family to know their genetic risk. Although considerable work has addressed issues of non-disclosure from the client's perspective, there is a lack of qualitative research into how genetic counselors address this issue in practice. In this study, a qualitative approach was taken to investigate whether genetic counselors in Australia use a relational approach to encourage the disclosure of genetic information from hereditary breast and ovarian cancer (HBOC) clients among family members; and if so, how they use it. Semi-structured qualitative interviews were conducted with 16 genetic counselors from selected states across Australia. Data collection and analysis were guided by a basic iterative approach incorporating a hybrid methodology to thematic analysis. The findings provide indicative evidence of genetic counselors employing a relational approach in three escalating stages--covert, overt and authoritative--to encourage the disclosure of genetic information. The findings lend credence to the notion that genetic counselors envision a form of relational autonomy for their clients in the context of sharing genetic information, and they depart from individualistic conceptions of care/solely client-centered counseling when addressing the needs of other family members to know their genetic status.

show abstract

Section: Family Comitymentioning

confidence: 99%

Section: Family Comitymentioning

confidence: 99%

Section: Authoritativementioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

A Relational Approach to Genetic Counseling for Hereditary Breast and Ovarian Cancer

Shepherd

Browne

Warwick

2016

Journal of Genetic Counseling

View full text Add to dashboard Cite

show abstract

“…The Lucassen and Parker model fits in with some broader themes in the literature, which we can only touch upon here 6 12 13. Their model acknowledges the growing unease with the dominant individualist discourse, which focuses on autonomy and personal rights 14.…”

Section: The Joint Model In a Broader Contextmentioning

confidence: 78%

Testing the limits of the ‘joint account’ model of genetic information: a legal thought experiment

2014

View full text Add to dashboard Cite

show abstract

Disclosing Genetic Information to Family Members: The Role of Empirical Ethics

Dupras

Ravitsky

2013

Encyclopedia of Life Sciences

View full text Add to dashboard Cite

The familial and predictive nature of genetic information raises ethical issues regarding its disclosure to biological relatives. Arguments in the bioethics literature have centered on the right of the patient to privacy and confidentiality versus the right of family members to receive information that is clinically relevant to them. Empirical research has shown that although the need for disclosure within the family is rarely contested by patients, they are preoccupied by the ethical dimensions of their ‘genetic responsibility’, share a desire to protect relatives from the possible adverse effects of disclosure, and need guidance regarding what, why, to whom, when and how genetic information should be disclosed to mitigate adverse outcomes. Empirical ethics thus contributes to important insights and help reframe the debate to better address the lived experiences of patients, family members and healthcare professionals. Key Concepts: Disclosure of genetic information within the family raises particular ethical issues. The disclosure debate has been framed as a conflict between respect for autonomy (i.e. the duty of the clinician to respect patient confidentiality) and beneficence/‘do no harm’ (i.e. the clinician's duty to warn others). It is suggested that a patient's relatives have a right to know genetic information when it is clinically relevant to them. Most patients feel a genetic responsibility to inform family members in order to promote their health and well being. Empirical studies have shown that disclosure decisions are complex and influenced by numerous factors. Empirical ethics involves empirical studies which provide information that can frame ethical debates, enhance normative analysis and inform clinical practices.

show abstract

Communication of Genetic Information within Families: The Case for Familial Comity

Cited by 11 publications

References 17 publications

A Relational Approach to Genetic Counseling for Hereditary Breast and Ovarian Cancer

A Relational Approach to Genetic Counseling for Hereditary Breast and Ovarian Cancer

Testing the limits of the ‘joint account’ model of genetic information: a legal thought experiment

Disclosing Genetic Information to Family Members: The Role of Empirical Ethics

Contact Info

Product

Resources

About