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Published on: June 21, 2018
Professional and personal attitudes about access and confidentiality in the genetic testing of children: a pilot
Elizabeth Campbell1, Lainie Friedman Ross
1Department of Sociology and the MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, IL 60637, USA.
Insights
Pediatricians and geneticists support predictive genetic testing for children but are hesitant to test their own. They emphasize patient-relative genetic information sharing while maintaining patient confidentiality.
Area of Science:
- Medical Ethics
- Pediatric Genetics
- Bioethics
Background:
- Predictive genetic testing in children presents complex ethical dilemmas concerning testing timing and result disclosure.
- Healthcare professionals' perspectives on these ethical issues are crucial for developing appropriate guidelines.
Purpose of the Study:
- To explore pediatricians' and geneticists' attitudes towards parental requests for predictive genetic testing in children.
- To examine healthcare professionals' views on disclosing genetic information to relatives and within their own families.
- To understand the distinction between professional and personal roles regarding genetic testing access and confidentiality.
Main Methods:
- Conducted semi-structured interviews with 12 pediatricians and 13 geneticists.
- Assessed hypothetical reactions to parental requests for predictive genetic testing in children.
- Investigated attitudes towards testing their own children and disclosure practices for patients and family members.
Main Results:
- Respondents generally agreed to provide predictive genetic testing for most conditions but showed reluctance to test their own children.
- A strong emphasis was placed on the importance of patients sharing genetic information with relatives, with directive counseling provided.
- While patient confidentiality was almost never breached professionally, many respondents indicated willingness to breach it within their own families.
Conclusions:
- Healthcare professionals differentiate between their professional and personal roles concerning predictive genetic testing for children.
- There is a willingness to offer greater access and confidentiality for patients compared to personal family situations.
- Findings highlight the nuanced ethical considerations and personal values influencing decisions about genetic testing and disclosure.
Abstract:
The ability to perform predictive genetic testing of children raises ethical concerns regarding whether and when to test and the disclosure of results. Semi-structured interviews with a convenience sample of pediatricians (12) and geneticists (13) were conducted to see how they would react to parental requests for predictive genetic testing of their children, and their attitudes about testing their own children. We also asked about disclosure attitudes and practices for their patients' relatives and within their own families. Respondents would provide predictive genetic testing for most conditions, yet were less likely to seek this information about their own children. Respondents believed it was very important for patients to share some types of genetic information with relatives, and were directive in their counseling about intrafamilial disclosure, especially within their own families. Although respondents would almost never breach patient confidentiality, many would breach confidentiality within their own families. Health care professionals distinguish between their professional and personal roles with regard to issues of access and confidentiality in predictive testing of children. They are willing to provide greater access and more confidentiality for their patients than within their own families.
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