Moral perspectives on the problem of elective D/deafness

Ukena - Kotze, Alexandra Rosanna Gertrude (2016-12)

Thesis (MA)--Stellenbosch University, 2016.

Thesis

ENGLISH ABSTRACT: As empirical knowledge is progressing within the field of genomic medicine, the scope of medical treatments that are able to diagnose, cure or prevent disability widen and as a result, the questions regarding the ethical permissibility surrounding these procedures become more complex. While reproductive technologies were originally designed to assist with issues such as infertility or test embryos for genetic diseases before implantation, it has now become clear that these technologies can offer an even wider array of reproductive options. Morally speaking, it seems that parents have a duty to use reproductive technologies responsibly and should refrain from explicitly choosing a child with a disability. The claim that parents have a moral obligation to choose the “best” possible child has been very controversial. This thesis specifically focuses on the ethical questions that arise in cases where culturally D/deaf parents express the wish to ensure the birth of a deaf child by making use of modern prenatal screening methods such as Pre-implantation Genetic Diagnosis (PGD) that could in principle fulfil this wish. Selecting for a disability and particularly deafness through prenatal screening methods triggers a morally complex debate, firstly because the parent’s wish is based on the belief that deafness is not a disability and secondly, because the practice of prenatal selection for disability itself is questionable on the grounds that this selection could possibly harm the future child. In this thesis, the belief that deafness is not a disability will be subjected to critique by presenting both sides of the debate, on the one hand showing that our perception of normality is a concept that is shaped by various historical influences and contexts and on the other, suggesting that deafness, regardless of definition, is a very real limitation and therefore a disability that should be treated as such. If it can be shown that deafness is indeed a disability, then it follows that the use of reproductive technologies for the sole purpose of selecting a deaf embryo over a hearing one is unethical. The aim of this thesis is firstly to advance our understanding of the so-called disability challenge by bringing together information from various sources and perspectives, highlighting the ethical, social and legal issues regarding reproductive choices and secondly, to give a suggestion on how to deal with these choices. The arguments imply the need for stricter and more elaborate guidelines in terms of public regulation surrounding available genetic information and a reassessment of parental moral obligation in terms of reproductive liberty.

AFRIKAANSE OPSOMMING: Soos wat die empiriese kennis binne in die veld van genomiese medisyne bevorder is, het die omvang van mediese behandelings wat gestremdheid kan diagnoseer, genees of voorkom verbreed. As gevolg hiervan het die vrae oor die etiese toelaatbaarheid van hierdie prosedures al hoe moeiliker geword. Terwyl reproduktiewe tegnologie oorspronklik ontwerp is om te help met probleme soos onvrugbaarheid, of om embrios vir genetiese siektes te toets voor hul inplanting, het dit nou duidelik geword dat hierdie tegnologie 'n groter verskeidenheid van reproduktiewe opsies kan bied. Moreel gesproke is dit die ouers se plig om reproduktiewe tegnologie op ‘n verantwoordelike manier te gebruik en hulle word al hoe meer deesdae daarvan afgeraai om 'n kind met 'n gestremdheid te kies. Dit is wel omstrede dat beweer word dat ouers 'n morele verpligting het om die "beste" kind moontlik te kies. Hierdie tesis fokus spesifiek op die etiese vrae wat na vore kom vir gevalle waar D/dowe ouers spesifiek vra om van moderne swangerskaptoetse en -metodes, soos Voor-inplanting Genetiese Diagnose (Pre-implantation Genetic Diagnosis - PGD), gebruik te maak om te verseker dat die gebore kind doof is. Die keuse rondom 'n gestremdheid, veral doofheid, wat bewys kan word deur swangerskaptoetse, veroorsaak ‘n komplekse morele debat, omdat die ouers se wense gebaseer word op die oortuiging en geloof dat doofheid nie ‘n gestremdheid is nie en tweedens, omdat die praktyk van swangerskaptoetse en die keuse vir gestremdheid bevraagteken word as gevolg van die moontlike skade aan die kind se toekoms. In hierdie tesis sal die oortuiging en siening dat doofheid nie ‘n gestremdheid is nie van albei kante gedebatteer word, om te bepaal of die siening van doofheid bloot ʼn historiese sosiale konstruk is en of, ongeag van definisie, gestremdheid die persoon wel ernstig beperk en daarom sover moontlik behandeling vereis. As dit bewys kan word dat doofheid wel 'n gestremdheid is, beteken dit dat die gebruik van reproduktiewe tegnologie wat aan 'n dowe embrio, eerder as ʼn horende een, voorkeur verleen, oneties is. Die doel van hierdie tesis is om kennis te verbreed rondom hierdie gestremdheiddebat deur gebruik te maak van verskeie bronne en sieninge. Die fokus sal wees op die etiese, sosiale en regskwessies met betrekking tot reproduktiewe keuses, asook om voorstelle te maak oor hoe mens te werk kan gaan met hierdie keuses. Die verskillende argumente vir en teen toon dat daar nie net ‘n behoefte bestaan aan strenger en meer omvattende reëls en riglyne nie, maar ook aan vrylik beskikbare genetiese inligting en 'n herevaluasie van ouers se morele verpligtinge as dit kom by reproduktiewe keuses.

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