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Lecture 11

Lecture 11 - Family History in Genetic Research

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Health Sciences
Health Sciences 2000A/B
Leichelle Little

LECTURE 11: FAMILY HISTORY IN GENETIC RESEARCH – THE PRIVACY PARADOX The Privacy Paradox • Maintaining confidentiality of the patient • Shared nature of genetic material (familial/community) Definitions • Privacy: the right to determine the extent and circumstances under which individuals divulge or receive personal information • Informed consent: acknowledgement that these individuals are autonomous agents who give their informed, voluntary consent to participate in the research or clinical services and that these ideals are being maintained • Confidentiality: the ethical and/or legal responsibility of the actual organization to safeguard this information The Genetic Family • The emergent field of medical genetics has led to a complex depiction of the family unit that extends beyond the simple researcher and patient/participant relationship • Disclosure of: o Medical information about certain family members AND o Personal genetic information which could expose familial information, such as the relative risk, or obligate carrier status of other relatives DNA and De-Identification • Genetic research studies sometimes require that personal information amongst relatives is not anonymized in order for linkage analysis and/or future studies Potential Violation of Rights? • Required personal information may potentially violate the rights of family members who did not consent for this information to be shared Real-Life Case Study: VCU Controversy • Twin study on depression and alcoholism • Father of an adult participant filed a complaint to the Office of Human Research Protections (Canadian equivalent: the Interagency Advisory Panel on Research Ethics) • VCU Family History Survey Controversy o “Where does any researcher get the nerve to ask one family member to report whether another family member suffers from abnormal genitalia, depression, infertility, alcoholism, schizophrenia...These conditions should have an expectation of privacy and a requirement for informed consent before they are revealed” • Decision o VCU institutional review board failed to adequately consider the inherent privacy rights and risks posed to third parties and whether or not informed consent was required from the family members mentioned in the survey instrument ECRIH • Tri-Council policy statement entitled “Ethical Conduct for Research Involving Humans” • Canada’s three federal research agencies: o Canadian Institute of Health Research o Natural Science and Engineering Research Council of Canada o Social Sciences and Humanities Research Council of Canada Who is considered a Participant? • Are family members considered participants when their own genetic information is revealed? • Participant: o “…An individual whose data and/or biological materials (such as DNA) are used in research…”  Indicates that family members are participants  Participant o Regarding human genetic research, there may be implications for participants and their “biological relatives” based on personal information that may be revealed  Separates participants and biological relatives  Third party = someone who is not a researcher or a participant, but is affected by the relationship between those persons • These conflicting statements produce very little guidance on who should be considered participants in a genetic study involving family members who have identifiable information revealed Do Biological Relatives have Shared Privacy Rights? • Privacy risks: the report acknowledges that appropriate steps need to be taken in order to manage the type of information that may be revealed in genetic research as there may be “…implications… for participants and their biological relatives” • This statement does not consider the privacy risks of biological relatives in the initial collection phase Informed Consent • The right to privacy is also related to the concept of consent • Privacy is respected, if an individual has an opportunity to exercise control over their personal information by consenting or dissenting to its disclosure • The decision to participate in research is seen as an expression of autonomy • Dyadic Researcher- Participant Relationship o A one-way relationship exists where “researchers shall provide participants with an opportunity to express preferences about whether informatio
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