Wallis Jacqueline Mae
Department of Philosophy, University of Bristol, Bristol, BS6 6JL, UK.
Med Health Care Philos. 2020 Mar;23(1):3-15. doi: 10.1007/s11019-019-09922-6.
As reproductive genetic technologies advance, families have more options to choose what sort of child they want to have. Using preimplantation genetic diagnosis (PGD), for example, allows parents to evaluate several existing embryos before selecting which to implant via in vitro fertilization (IVF). One of the traits PGD can identify is genetic deafness, and hearing embryos are now preferentially selected around the globe using this method. Importantly, some Deaf families desire a deaf child, and PGD-IVF is also an option for them. Selection for genetic deafness, however, encounters widespread disapproval in the hearing community, including mainstream philosophy and bioethics. In this paper I apply Elizabeth Barnes' value-neutral model of disability as mere-difference to the case of selecting for deafness. I draw on evidence from Deaf Studies and Disability Studies to build an understanding of deafness, the Deaf community, and the circumstances relevant to reproductive choices that may obtain for some Deaf families. Selection for deafness, with deafness understood as mere-difference and valued for its cultural identity, need not necessitate impermissible moral harms. I thus advocate that it is sometimes morally permissible to select for deafness in one's child.
随着生殖遗传技术的进步，家庭对于想要生育何种孩子有了更多选择。例如，使用植入前基因诊断（PGD），父母可以在通过体外受精（IVF）选择植入哪个胚胎之前，对几个现有的胚胎进行评估。PGD能够识别的特征之一是遗传性耳聋，目前全球都在优先选择听力正常的胚胎使用这种方法。重要的是，一些失聪家庭希望生育失聪孩子，PGD-IVF对他们来说也是一种选择。然而，选择遗传性耳聋在听力正常的群体中遭到广泛反对，包括主流哲学和生物伦理学。在本文中，我将伊丽莎白·巴恩斯（Elizabeth Barnes）的将残疾视为单纯差异的价值中立模型应用于选择耳聋的案例。我借鉴聋人研究和残疾研究的证据，来理解耳聋、聋人群体以及一些失聪家庭在生殖选择中可能面临的相关情况。将耳聋理解为单纯差异并因其文化身份而重视它，选择耳聋不一定会造成不可接受的道德伤害。因此，我主张有时选择生育失聪孩子在道德上是允许的。
