Zuckerman Shachar, Zeevi David A, Gooldin Sigal, Altarescu Gheona
Medical Genetics Institute - Shaare Zedek Medical Center, Hebrew University Hadassah Medical School, Jerusalem, Israel.
The Department of Sociology and Anthropology, Hebrew University, Jerusalem, Israel.
Eur J Hum Genet. 2017 Oct;25(10):1113-1117. doi: 10.1038/ejhg.2017.113. Epub 2017 Jul 26.
The use of PGD technology to select against genetic disorders and traits is increasing. Although PGD may eliminate some of the obstacles related to conservative options of prenatal diagnosis, it can raise personal, social and moral questions. Ethical issues concerning the justified uses of PGD are a subject of ongoing debate among medical and bioethical communities. Although attitudes toward the acceptable uses of PGD were evaluated among population groups worldwide, bioethics councils were criticized for ignoring public perspectives. In the last decade PGD has been widely used in Israel. The ethical guidelines were created solely by medical-bioethics experts and, some felt, totally isolated from public opinions. Semi-structured in-depth interviews of 37 users (carriers of autosomal recessive, dominant and X-linked disorders, and HLA-matching) were performed. The interviews explored attitudes toward ethical and sociological aspects of PGD. The overall results of this study show highly favorable attitudes of Israeli PGD users toward medical applications. Furthermore, our subjects demonstrate a more permissive stand toward the controversial application of social sex selection albeit with strong objection to esthetic means of selection. PGD users are coping with both genetic disease and load of the PGD procedure. Taking into consideration their opinion is important since it reflects the gains and burdens of these procedures alongside the demand for future optional services. Their attitudes should play an important role in the professional discussion concerning the justified uses of PGD and should significantly influence the design of policy making in this field.
利用植入前基因诊断(PGD)技术来筛选排除遗传疾病和性状的情况日益增多。尽管PGD可能消除了一些与产前诊断保守方案相关的障碍,但它可能引发个人、社会和道德问题。有关PGD合理用途的伦理问题是医学和生物伦理学界持续争论的主题。尽管在全球范围内对不同人群对PGD可接受用途的态度进行了评估,但生物伦理委员会因忽视公众观点而受到批评。在过去十年中,PGD在以色列得到了广泛应用。伦理准则完全由医学 - 生物伦理专家制定,一些人认为这些准则完全脱离了公众意见。我们对37名使用者(常染色体隐性、显性和X连锁疾病携带者以及人类白细胞抗原匹配者)进行了半结构化深度访谈。这些访谈探讨了他们对PGD伦理和社会学方面的态度。这项研究的总体结果显示,以色列PGD使用者对医学应用持高度支持的态度。此外,我们的研究对象对社会性别选择这一有争议的应用表现出更为宽容的立场,尽管他们强烈反对出于审美目的的选择方式。PGD使用者既要应对遗传疾病,又要承受PGD程序带来的负担。考虑他们的意见很重要,因为这反映了这些程序的益处和负担以及对未来可选服务的需求。他们的态度在关于PGD合理用途的专业讨论中应发挥重要作用,并应显著影响该领域政策制定的设计。