Kalfoglou Andrea L, Scott Joan, Hudson Kathy
Genetics and Public Policy Centre, Phoebe R Berman Bioethics Institute, Johns Hopkins University, 1717 Massachusetts Avenue NW, Suite 530, Washington, DC 20036, USA.
Reprod Biomed Online. 2005 Oct;11(4):486-96. doi: 10.1016/s1472-6483(10)61145-5.
Preimplantation genetic diagnosis (PGD) providers and patients have a vested interest in policy related to the use and regulation of PGD. To understand their experiences and attitudes, 32 in-depth interviews were conducted. Participants included 13 people at risk of transmitting a single-gene alteration to their children (10/13 had actually used PGD to try to have an unaffected child) and 19 PGD service providers (four nurses, five genetic counsellors, two reproductive endocrinologists, two geneticists, two physician-geneticists, two embryologists, and two laboratory directors). Virtually all participants supported the use of PGD to avoid severe, life-threatening genetic illness or to select embryos that are a tissue match for a sick sibling, but their attitudes varied significantly over the appropriateness of using PGD to avoid adult-onset genetic disease, to select for sex, or to select for other non-medical characteristics. There was disagreement within the PGD provider community about whether or not PGD is experimental. Participants were more concerned about overzealous government regulation of PGD creating barriers to access than potential abuses of the technology, and expected the PGD provider community to take the lead in ensuring that PGD is used for ethically appropriate purposes.
植入前基因诊断（PGD）的提供者和患者对于与PGD使用及监管相关的政策有着既得利益。为了解他们的经历和态度，开展了32次深度访谈。参与者包括13名有将单基因改变遗传给子女风险的人（其中10/13实际使用过PGD以生育未受影响的孩子）以及19名PGD服务提供者（4名护士、5名遗传咨询师、2名生殖内分泌学家、2名遗传学家、2名医生 - 遗传学家、2名胚胎学家和2名实验室主任）。几乎所有参与者都支持使用PGD来避免严重的、危及生命的遗传疾病，或选择与患病同胞组织匹配的胚胎，但他们对于使用PGD来避免成人期发病的遗传疾病、选择胎儿性别或选择其他非医学特征的适当性态度差异很大。在PGD提供者群体中，对于PGD是否属于实验性存在分歧。参与者更担心政府对PGD的过度监管会造成获取障碍，而非该技术的潜在滥用情况，并期望PGD提供者群体带头确保PGD用于符合伦理道德的适当目的。
