Institute of Psychiatric Phenomics and Genomics, Ludwig-Maximilians-University, Munich, Germany.
Institute of Psychiatry and Psychotherapy, University of Göttingen, Göttingen, Germany.
PLoS One. 2018 Jun 20;13(6):e0198249. doi: 10.1371/journal.pone.0198249. eCollection 2018.
In clinical practice and in research, there is an ongoing debate on how to return incidental and secondary findings of genetic tests to patients and research participants. Previous investigations have found that most of the people most of the time are in favor of full disclosure of results. Yet, the option to reject disclosure, based on the so-called right not to know, can be valuable especially for some vulnerable subgroups of recipients. In the present study we investigated variations in informational preferences in the context of genetic testing in a large and diverse German sample. This survey examined health care professionals, patients, participants of genetic counseling sessions and members of the general population (N = 518). Survey participants were assessed regarding their openness to learning about findings under various hypothetical scenarios, as well as their attitudes about the doctor-patient-relationship in a disclosure situation and about informational transfer to third parties. While the majority of participants wanted to learn about their findings, the extent of support of disclosure varied with features of the hypothetical diagnostic scenarios (e.g., controllability of disease; abstract vs. concrete scenario description) and demographic characteristics of the subjects. For example, subjects with higher levels of education were more selective with regards to the kind of information they want to receive than those with lower levels of education. We discuss implications of these findings for the debate about the right not to know and for the clinical practice of informed consent procedures.
在临床实践和研究中，如何向患者和研究参与者返还遗传检测的偶然和次要发现，一直存在争议。先前的研究发现，大多数人大多数时候都赞成全面披露结果。然而，基于所谓的“知情权”，拒绝披露的选择可能是有价值的，尤其是对于一些脆弱的接受者亚组。在本研究中，我们在一个大型且多样化的德国样本中研究了遗传检测背景下信息偏好的变化。这项调查考察了医疗保健专业人员、患者、遗传咨询会议的参与者和一般人群（N=518）。调查参与者根据各种假设情景，评估他们对了解发现的开放性，以及他们对披露情况下医患关系的态度，以及向第三方传递信息的态度。虽然大多数参与者希望了解他们的发现，但披露的支持程度因假设诊断情景的特征（例如，疾病的可控性；抽象与具体情景描述）和受试者的人口统计学特征而异。例如，教育程度较高的受试者比教育程度较低的受试者在他们希望接收的信息种类上更具选择性。我们讨论了这些发现对关于“知情权”的争论以及知情同意程序的临床实践的影响。
