What Does the Duty to Warn Require?

Shah, Seema K.; Hull, Sara Chandros; Spinner, Michael A.; Berkman, Benjamin E.; Sanchez, Lauren A.; Abdul-Karim, Ruquyyah; Hsu, Amy P.; Claypool, Reginald J.; Holland, Steven M.

doi:10.1080/15265161.2013.828528

Cited by 18 publications

(15 citation statements)

References 7 publications

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“…Our objective data show that medical geneticists do not typically discuss psychiatric manifestations of 22qDS at the time of diagnosis or in follow-up appointments, and that follow-up appointments are not always suggested. Without this knowledge, early symptoms will likely be missed and therapeutic interventions could be delayed [Shah et al, 2013]. While medical geneticists have self-reported that they were more likely to discuss psychiatric risk when patients are older [Morris et al, 2013], our data show that this is not happening-at least in this clinical setting.…”

Section: Resultsmentioning

confidence: 61%

Disclosure of psychiatric manifestations of 22q11.2 deletion syndrome in medical genetics: A 12‐year retrospective chart review

Baughman

Morris

Jensen

et al. 2015

American J of Med Genetics Pt A

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Individuals with 22q11.2 deletion syndrome (22qDS) have increased risk for psychiatric disorders. However, while medical geneticists self-report discussing psychiatric features of 22qDS with families (though often only when the child is older), most parents of children with 22qDS report receiving information about the psychiatric manifestations of 22qDS from non-medical sources. In an attempt to reconcile these previous findings, we sought to objectively determine the frequency with which medical geneticists discuss the potential psychiatric manifestations of 22qDS: (i) in letters to referring physicians and (ii) with families, and to explore plans for follow-up. We abstracted data from charts of patients with 22qDS who were referred to a single medical genetics center between January 1, 2000 and December 31, 2012. Psychiatric disorders were discussed in consult letters to referring physicians for n = 57 (46%) of the 125 patients who met inclusion criteria-making them less frequently discussed than all other features of 22qDS. Despite exhaustive review of charts, the content of discussions with families was typically unclear. Follow-up in medical genetics was suggested for 50 people but only 18 (36%) of these patients returned. Disclosure of psychiatric features of 22qDS to families is necessary so that psychiatric disorders can be identified in time for early intervention to be implemented to achieve better prognosis for those affected. These empiric data offer some explanation as to why psychiatric services are underused by individuals with 22qDS.

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Section: Resultsmentioning

confidence: 61%

Disclosure of psychiatric manifestations of 22q11.2 deletion syndrome in medical genetics: A 12‐year retrospective chart review

Baughman

Morris

Jensen

et al. 2015

American J of Med Genetics Pt A

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“…The main exception to this duty arises when third parties might be exposed to an unacceptable degree of damage, especially within the context of HIV/AIDS or psychiatry [4]. In Turkey there are no legal standards about a duty to warn in such situations.…”

Section: Discussionmentioning

confidence: 99%

Attitudes of physicians and patients towards disclosure of genetic information to spouse and first-degree relatives: a case study from Turkey

Akpinar

Ersoy

2014

BMC Med Ethics

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BackgroundWhen considering the principle of medical confidentiality, disclosure of genetic information constitutes a special case because of the impact that this information can have on the health and the lives of relatives. The aim of this study is to explore the attitudes of Turkish physicians and patients about sharing information obtained from genetic tests.MethodsThe study was carried out in Kocaeli, Turkey. Participants were either paediatricians and gynaecologists registered in Kocaeli, or patients coming to the genetic diagnosis centre for karyotype analysis in 2008. A self-administered paper questionnaire was given to the physicians, and face-to-face structured interviews were conducted with patients. We used a case study involving a man who was found to be a balanced chromosome carrier as a result of a test conducted after his first baby was born with Down's syndrome. However, he refused to share this information with his wife or his siblings. Percentages of characteristics and preferences of the participants were calculated, and the results were analysed using Kruskal-Wallis test.ResultsA total of 155 physicians (68% response rate) and 104 patients (46% response rate) were participated in the study. Twenty-six percent of physicians and 49% of patients believed that genetic information belongs to the whole family. When participants were asked with whom genetic information should be shared for the case study, most of the physicians and patients thought the physician should inform the spouse (79%, 85%, respectively). They were less likely to support a physician informing a sibling (41%, 53%, respectively); whereas, many thought the testee has an obligation to inform siblings (70%, 94%, respectively).ConclusionsAlthough Turkey’s national regulations certainly protect the right of privacy of the testee, the participants in our study appear to believe that informing the spouse, who is not personally at risk of serious damage, is the physician’s responsibility, while informing siblings, is the testee’s responsibility. Therefore we believe that opening ethical discussions with clinicians about the sharing of genetic information, establishing guidelines for practice and sharing these guidelines and the reasons behind them with the wider population, will help to pre-empt ethical dilemmas.

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“…The underlying ethical justification for professionals to actively contact relatives that are at risk is a duty to warn [Bredenoord et al, 2011;Shah et al, 2013]. A duty to warn is a specification of the duty to rescue.…”

Section: The Professional's Responsibilitymentioning

confidence: 99%

“…Current ethical literature focuses primarily on the scenario that a patient explicitly refuses to share potentially life-saving genetic information with relatives [Falk et al, 2003;Offit et al, 2004;Bombard et al, 2012;Shah et al, 2013]. Indeed, a majority of genetic professionals have encountered this dilemma at least once in their careers [McLean et al, 2013].…”

Section: Introductionmentioning

confidence: 99%

Am I My Family's Keeper? Disclosure Dilemmas in Next-Generation Sequencing

et al. 2016

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Ever since genetic testing is possible for specific mutations, ethical debate has sparked on the question of whether professionals have a duty to warn not only patients but also their relatives that might be at risk for hereditary diseases. As next-generation sequencing (NGS) swiftly finds its way into clinical practice, the question who is responsible for conveying unsolicited findings to family members becomes increasingly urgent. Traditionally, there is a strong emphasis on the duties of the professional in this debate. But what is the role of the patient and her family? In this article, we discuss the question of whose duty it is to convey relevant genetic risk information concerning hereditary diseases that can be cured or prevented to the relatives of patients undergoing NGS. We argue in favor of a shared responsibility for professionals and patients and present a strategy that reconciles these roles: a moral accountability nudge. Incorporated into informed consent and counseling services such as letters and online tools, this nudge aims to create awareness on specific patient responsibilities. Commitment of all parties is needed to ensure adequate dissemination of results in the NGS era.

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What Does the Duty to Warn Require?

Cited by 18 publications

References 7 publications

Disclosure of psychiatric manifestations of 22q11.2 deletion syndrome in medical genetics: A 12‐year retrospective chart review

Disclosure of psychiatric manifestations of 22q11.2 deletion syndrome in medical genetics: A 12‐year retrospective chart review

Attitudes of physicians and patients towards disclosure of genetic information to spouse and first-degree relatives: a case study from Turkey

Am I My Family's Keeper? Disclosure Dilemmas in Next-Generation Sequencing

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