Ethics in genetic counselling.
Ethics in genetic counselling.
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DOI：
10.1007/s12687-018-0371-7
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发表时间：
2019-01
影响因子：
1.9
通讯作者：
Wallgren-Pettersson C
中科院分区：
文献类型：
--
作者：
Clarke AJ;Wallgren-Pettersson C
困难的伦理问题出现在患者和医学遗传学专业人员，往往涉及到患者的家庭或他们的社会背景。解决这些问题需要对沟通的细微差别保持敏感，并承诺做到清晰和一致。它还受益于对伦理理论不同方法的认识。遗传学中遇到的许多伦理问题都与不同人的愿望或利益之间的紧张关系有关，有时甚至是（尚未）存在或作为胚胎存在的人，无论是在已确定的怀孕中还是在体外。对儿童或年轻人或未来可能的子女或家庭其他成员的长期福利的关注，可能会导致患者（客户）在遗传咨询中感到紧张。当专业人员建议向亲属披露信息而患者认为这太困难时，或者当专业人员认为父母寻求的儿童基因检测不合适时，患者和专业人员之间的观点也可能出现差异。患者社区的期望也可能导致患者和咨询师之间的观点差异。遗传技术的最新发展使全基因组研究成为可能。这些都产生了额外的和更复杂的数据，放大和加剧了一些预先存在的伦理问题，包括那些偶然的（额外的寻求和次要的）发现和识别变异目前的不确定意义，使基因组研究的报告可能往往是临时的，而不是最终的。在这些问题上正在取得经验，但实质性挑战可能会长期存在。
Difficult ethical issues arise for patients and professionals in medical genetics, and often relate to the patient’s family or their social context. Tackling these issues requires sensitivity to nuances of communication and a commitment to clarity and consistency. It also benefits from an awareness of different approaches to ethical theory. Many of the ethical problems encountered in genetics relate to tensions between the wishes or interests of different people, sometimes even people who do not (yet) exist or exist as embryos, either in an established pregnancy or in vitro. Concern for the long-term welfare of a child or young person, or possible future children, or for other members of the family, may lead to tensions felt by the patient (client) in genetic counselling. Differences in perspective may also arise between the patient and professional when the latter recommends disclosure of information to relatives and the patient finds that too difficult, or when the professional considers the genetic testing of a child, sought by parents, to be inappropriate. The expectations of a patient’s community may also lead to the differences in perspective between patient and counsellor. Recent developments of genetic technology permit genome-wide investigations. These have generated additional and more complex data that amplify and exacerbate some pre-existing ethical problems, including those presented by incidental (additional sought and secondary) findings and the recognition of variants currently of uncertain significance, so that reports of genomic investigations may often be provisional rather than definitive. Experience is being gained with these problems but substantial challenges are likely to persist in the long term.
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影响因子：
1.9
作者：
Arribas-Ayllon, Michael;Sarangi, Srikant;Clarke, Angus
通讯作者：
Clarke, Angus
影响因子：
5.2
作者：
Baig, Sheharyar S.;Strong, Mark;Quarrell, Oliver W.
通讯作者：
Quarrell, Oliver W.
DOI：
10.1038/gim.2011.62
发表时间：
2012-04
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
通讯作者：
--
影响因子：
4
作者：
Binedell, J;Soldan, JR;Harper, PS
通讯作者：
Harper, PS
影响因子：
2
作者：
Atkin, Karl;Ahmed, Shenaz;Green, Josephine M.
通讯作者：
Green, Josephine M.