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HAT Forum - "Disabled Children by Choice"

  • The 519, Rm 304 (check lobby screen to be sure) 519 Church Street Toronto, ON, M4Y 2C9 Canada (map)

THE ETHICAL DILEMMA OF HAVING DISABLED CHILDREN BY CHOICE

When is it wrong to bring children with serious diseases and disabilities into this world?

Despite having access to the most innovative medical tools that help to identify birth defects, parents still choose to give birth to disabled children (1). In the same vain, many parents who visit IVF clinics also use Pre-Implantation Genetic Testing (PGT) – a procedure used prior to implantation to help identify genetic and chromosomal defects within embryos. Ethical analysis of PGT suggests potential moral issues resulting from the use of this technology such as opening a path towards eugenics, and the creation of designer babies based on subjective parental criteria as to what constitutes a better life (i.e., choosing a disabled child (2).    

Researchers Bonnie Steinbock and Ron McClamrock argue that the children may be morally wronged if their disability disallows them for meeting the minimal requirements of well-being  (which could also be labelled as depriving them of their birthrights (3).

  • It is understandable that a parent wants their child to be like them. But is it ethical to set limits on a child’s potential by deliberately forcing them to live with a disability?

  •  “The child is harmed by being selected to exist only if his or her life is so bad it is not worth living” (Julian Savulescu, Australian bioethicist). Is it possible to define the circumstances of when a life is not worth living?

  •  What is your personal opinion on having children with disabilities? Knowing your embryo caries defective mutations in its DNA that may lead to severe disabilities, would you still have a child?

  •  Is it okay to use IVF genetic testing to screen for other traits beside potential health issues? Such as selecting for better looks? Higher intelligence? A specific disability? 

 E   X   A   M   P   L   E   S

A deaf lesbian couple in US deliberately created a deaf child.  Sharon Duchesneau and Candy McCullough used their own sperm donor (after not being able to find a deaf sperm donor in the clinic), a deaf friend with five generations of deafness in his family. Today they have two deaf/partially deaf children; they see deafness as a part of their cultural identity, therefore one of their children was denied a hearing aid in order to fully integrate him into the deaf community. (4)               

When both parents have dwarfism, their embryos have a 50% chance of having dwarfism, a 25% chance of normal height, and 25% of a fatal condition. PGT allows parents to know their embryo’s height or a possible fatal condition. Most parents with dwarfism deliberately choose embryos with dwarfism genes. For instance, Mary Ellen Little, a New Jersey nurse with dwarfism, had a prenatal testing, hoping her child will be also born with dwarfism. (5)

It’s unknown how often physicians are asked to transfer embryos with genetic anomalies, but there is ground to believe that each year the number is increasing. A 2008 survey found that 3 % of IVF clinics offering PGT had had patients who wanted “to select an embryo for the presence of a disability.” There’s been a case in US where a woman chose to transfer the only embryo that could lead to a fruitful pregnancy, despite it having a BRCA mutation (that increases the risk of certain cancers). (6)

 REFERENCES:
1)
https://www.statnews.com/2017/10/23/ivf-embryo-genetic-testing/
2) https://www.ncbi.nlm.nih.gov/pubmed/29307878
3) Steinbock & McClamrock, 1994. https://www.albany.edu/~ron/papers/badbirth.html
4) Teather, David. „Lesbian couple have deaf baby by choice“. The Guardian Newspaper.
5) Sanghavi, Darshak M. Wanting Babies Like Themselves, Some Parents Choose Genetic Defects“. New York Times.
6) https://www.statnews.com/2017/10/23/ivf-embryo-genetic-testing/

NOTE: The HAT Forum adheres strictly to the City of Toronto Policy on Non-Discrimination (http://www.the519.org/public/content/policy-files/The519SpaceUsePolicy.pdf)