Good Ethics Requires Good Science: Why Transplant Programs Should NOT Disclose Misattributed Parentage

Ross, Lainie Friedman

doi:10.1111/j.1600-6143.2009.03011.x

Cited by 18 publications

(20 citation statements)

References 26 publications

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“…25 On the other hand, Ross challenges the labeling of misattributed paternity as an 'incidental finding' , as this might mask the serious moral accusation contained in such a finding. 26 This is an example that raises several problems simultaneously: even if disclosure plans are drawn up for clinically significant, actionable IFs, different people will respond differently to the same finding, and it can be difficult to anticipate someone's response if the professional-subject relationship is relatively distant and impersonal, though this distance may be in line with the nature of the genetic test. Expressed another way, issues arise around how fixed definitions and protocols interact with respect for autonomy and professional roles.…”

Section: Discussionmentioning

confidence: 99%

To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts

2012

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Any test that produces visual images or digital or genetic sequences will tend to produce incidental findings because more will be visible than what was originally sought. We conducted a systematic review of the ethical reasons presented in the literature for and against the disclosure of incidental findings arising in clinical and research genetics contexts. A search of electronic databases resulted in 13 articles included for systematic review. Articles presented reasons for and against disclosure, and reasons for proceeding with caution when making decisions about disclosure. One major recommendation of the reviewed articles is in favor of qualified disclosure: incidental findings with confirmed clinical utility where there is the possibility of treatment or prevention should be disclosed, with exceptions. A second type of recommendation is that disclosure should proceed with caution, especially in the context of new genetic technologies and genetic testing involving minors. It is also recommended that the number of possible incidental findings be limited even before genetic testing is carried out. Such a policy, which we advocate, would show preference for non-disclosure.

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Section: Discussionmentioning

confidence: 99%

To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts

2012

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“…Similarly, it is argued that transplant physicians do not have a justifiable imperative to disclose misattributed paternity. The potential discovery of nonparentage qualifies as a foreseeable risk and informed consent processes should include an explanation that HLA and ABO testing is done to screen for compatibility only, and that other implications such as possible misattributed parentage will not be disclosed (41,43,44). A recent survey was conducted with potential donors, recipients and health professionals on sharing personal health information in living kidney donation.…”

Section: Discussionmentioning

confidence: 99%

Living Kidney Donor Assessment: Challenges, Uncertainties and Controversies Among Transplant Nephrologists and Surgeons

Tong

Chapman

Wong

et al. 2013

American Journal of Transplantation

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The assessment of living kidney donors presents unique ethical challenges and complex psychosocial implications. This study aimed to ascertain the perspectives of transplant nephrologists and surgeons on living kidney donor assessment. Semi‐structured, face‐to‐face interviews were conducted with 110 transplant nephrologists and surgeons from 43 transplant units in 12 countries from Europe, Australasia and North America. The challenge of defining acceptable risk to the donor was central to five themes identified: burden of responsibility (personal accountability, policing morality, democratic decision making, meeting legal obligations, optimizing outcomes and innovation, relinquished control); medical protectiveness (prognostic uncertainty, skepticism of donor risk perception, avoidance of undue coercion, concerns for dubious motivations and coercion, safeguard donor well‐being, ethical information disclosure); respecting donor autonomy (facilitate informed‐decision making, concede to donor risk acceptance, benefit of the doubt, donor mandate to maintain health, acceptable altruism); driving ideologies (preserving equity, championing living donation, cognizance of anti‐paternalism) and contextual pressures (evolving donor demographic, resource limitations). Living kidney donor assessment involves complex interactions between safeguarding the donors' welfare and respecting their autonomy. In our opinion, authoritative and well‐described transplant unit, hospital and public policy positions that make explicit the considerations that are often implicit may reduce the uncertainty within which living donors are assessed today.

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“…Avoiding involvement in personal issues through this approach has been established for transplant centers in other contexts (24). However, the donor's increased risk behavior is material to the recipient's decision about whether to accept the donor's organ.…”

Section: Resultsmentioning

confidence: 99%

The Challenge of Informed Consent for Increased Risk Living Donation and Transplantation

Gordon

Beauvais²,

Theodoropoulos

et al. 2011

American Journal of Transplantation

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The Organ Procurement and Transplantation Network (OPTN) mandates that organ recipients provide "specific informed consent" before accepting organs that the OPTN defines as "increased risk". However, the OPTN does not provide specific guidelines for what information should be disclosed to potential recipients. Such vagueness opens the door to inadequate informed consent. This paper examines the ethical dimensions of informed consent when the prospective living donor has self-reported behaviors associated with increased risk for infection transmission. Donor privacy is a primary ethical concern that conflicts with recipients' informed consent for use of increased risk organs. We propose that both the increased risk status and the specific behavior be disclosed to the recipient. Because the actual risk posed is linked to the type of risk behavior, disclosure is therefore needed to make an informed decision. The donor's risk behavior is material to recipients' decision making because it may impact the donor-recipient relationship. This relationship is the foundation of the donation and acceptance transaction, and thus comprises a critical feature of the recipient's informed consent. Optimizing a recipient's informed consent is essential to protecting patient safety and autonomy.

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Good Ethics Requires Good Science: Why Transplant Programs Should NOT Disclose Misattributed Parentage

Cited by 18 publications

References 26 publications

To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts

To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts

Living Kidney Donor Assessment: Challenges, Uncertainties and Controversies Among Transplant Nephrologists and Surgeons

The Challenge of Informed Consent for Increased Risk Living Donation and Transplantation

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