The duty to recontact: Attitudes of genetics service providers
The duty to recontact: Attitudes of genetics service providers
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DOI：
10.1086/302293
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发表时间：
1999-03-01
影响因子：
9.8
通讯作者：
Huggins, MJ
中科院分区：
文献类型：
--
作者：
Fitzpatrick, JL;Hahn, C;Huggins, MJ
“再联系的义务”一词是指遗传学服务提供者（GSP）可能有道德和/或法律的义务，就可能与他们相关的研究进展与前患者再联系。尽管目前这种做法不是标准护理的一部分，但一些人认为未来可能会确立这种义务。然而，从全球战略优先事项的角度来看，关于这一要求的影响的资料很少。为了探讨遗传学专业人士对这个问题的看法，我们向美国人类遗传学会随机挑选的1,000名美国和加拿大成员发送了一份自填问卷。我们收到了252份完整的问卷。受访者的主要类别是医生遗传学家（41%），博士。遗传学家（30%）和遗传咨询师（18%）;总数的72%表示他们看到病人。答复者表示，保持联系的责任应由卫生专业人员和患者共同承担。受访者对再次接触患者是否应该成为护理标准存在分歧：46%回答是，43%回答否，11%不知道。回答是的人包括44%的内科遗传学家，53%的博士。遗传学家和31%的遗传咨询师;答案在统计学上与职位或执业国家无关，但取决于受访者是否看到患者（43%回答是）或不（54%回答是）。关于重新联系患者的可能益处和负担以及告知患者研究进展的各种替代方法，也缺乏共识。定性数据的分析表明，大多数受访者认为，重新接触患者的道德理想，但不可行的目标。提出了今后制定实践指南时应考虑的要点。
The term "duty to recontact" refers to the possible ethical and/or legal obligation of genetics service providers (GSPs) to recontact former patients about advances in research that might be relevant to them. Although currently this practice is not part of standard care, some argue that such an obligation may be established in the future. Little information is available, however, on the implications of this requirement, from the point of view of GSPs. To explore the opinions of genetics professionals on this issue, we sent a self-administered questionnaire to 1,000 randomly selected U.S. and Canadian members of the American Society of Human Genetics. We received 252 completed questionnaires. The major categories of respondents were physician geneticist (41%), Ph.D. geneticist (30%), and genetic counselor (18%); 72% of the total stated that they see patients. Respondents indicated that responsibility for staying in contact should be shared between health professionals and patients. Respondents were divided about whether recontacting patients should be the standard of care: 46% answered yes, 43% answered no, and 11% did not know. Those answering yes included 44% of physician geneticists, 53% of Ph.D. geneticists, and 31% of genetic counselors; answers were statistically independent of position or country of practice but were dependent on whether the respondent sees patients (43% answered yes) or not (54% answered yes). There also was a lack of consensus about the possible benefits and burdens of recontacting patients and about various alternative methods of informing patients about research advances. Analysis of qualitative data suggested that most respondents consider recontacting patients an ethically desirable, but not feasible, goal. Points to consider in the future development of guidelines for practice are presented.