This study examined perspectives on the ethical implications of preimplantation genetic testing (PGT) among individuals who actually (not hypothetically) used or considered using PGT. Most of the prior patient-centered research on PGT ethics used qualitative designs (9 out of the 11 articles) and focused only on single gene testing. This cross-sectional study used an anonymous online questionnaire; 15 items assessed potential ethical concerns involved in PGT decision-making, including clinical indications for PGT, the greater implications of PGT for society, and unused embryo disposition. N = 207 individuals (mean female/male age 35.7/38.9 years, 21% Hispanic or non-White) who had recently used or considered using PGT for single gene (60%) or for chromosomal testing (40%) completed the questionnaire. Most respondents supported PGT screening for disease conditions with childhood or adult onset that are untreatable (64%–85% across items); most opposed PGT for trait selection (76%–81%). Most respondents agreed that PGT aids in parental decision-making (66%–67%), although some expressed concern over potential unforeseen consequences (25%–30%). Regarding disposition of embryos without known genetic abnormalities, most respondents favored freezing indefinitely (86%) or donating to another family (69%), while for embryos with genetic abnormalities, most respondents favored donating to research (78%) or destroying them (62%). Stratification by religious affiliation revealed several differences, such as less acceptance of PGT for diseases that occur in adulthood and have no treatment options among Protestants (p = .015) and greater willingness to donate surplus embryos to research among participants without a religious affiliation (p < .001). These results are limited by the relatively homogeneous sample of participants (mostly White, married, and predominantly college-educated). In summary, participants who considered/used PGT found PGT acceptable overall for screening for disease conditions; most opposed using PGT for trait selection. Our novel questionnaire provides a structured tool for assessing the ethical perspectives surrounding the use of PGT.

中文翻译：

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考虑/使用植入前（胚胎）基因检测的个人的伦理和道德观点

本研究探讨了在实际（非假设）使用或考虑使用 PGT 的个人中对植入前基因检测 (PGT) 的伦理影响的看法。大多数先前以患者为中心的 PGT 伦理研究都使用定性设计（11 篇文章中有 9 篇），并且只关注单基因检测。这项横断面研究使用匿名在线问卷调查；15 个项目评估了 PGT 决策中涉及的潜在伦理问题，包括 PGT 的临床适应症、PGT 对社会的更大影响以及未使用的胚胎处置。ñ = 最近使用或考虑使用 PGT 进行单基因 (60%) 或染色体检测 (40%) 的 207 人（平均女性/男性年龄 35.7/38.9 岁，21% 西班牙裔或非白人）完成了问卷。大多数受访者支持对儿童或成人发病且无法治疗的疾病进行 PGT 筛查（64%–85% 的项目）；大多数反对 PGT 进行性状选择 (76%–81%)。大多数受访者同意 PGT 有助于父母的决策 (66%–67%)，尽管有些人对潜在的不可预见后果表示担忧 (25%–30%)。对于没有已知遗传异常的胚胎的处置，大多数受访者倾向于无限期冷冻（86%）或捐赠给另一个家庭（69%），而对于有遗传异常的胚胎，大多数受访者倾向于捐赠给研究（78%）或销毁它们（62 %）。p  = .015）并且在没有宗教信仰的参与者中更愿意捐赠多余的胚胎进行研究（p  <.001）。这些结果受到参与者相对同质的样本（主要是白人、已婚和主要受过大学教育）的限制。总之，考虑/使用 PGT 的参与者发现 PGT 总体上可以用于筛查疾病状况；大多数人反对使用 PGT 进行性状选择。我们的新问卷提供了一个结构化工具，用于评估围绕使用 PGT 的伦理观点。