Some of the people I have spoken with have a sibling with a genetic disorder. They have expressed how much they value their sib and the experiences they have had with or because of their brother or sister. There is often strong loyalty to that person, disability and all. They don’t want to say or feel anything that would imply that the world or their family would have been better off without them. They therefore have conflicted feelings about preventing the birth of another affected child, even though they would have loved to be able to eliminate the health problems of their sib.
You have to admit that it could hit you pretty hard if “everyone” wants to avoid having another someone-like-you come into the world! On the other hand, many affected with a disorder say they hope their relatives are not also born with the problem.
This is related to a hot topic in the disability community. A high-profile instance is when deaf parents want a deaf child, which, if their deafness is genetically based, they could arrange through IVF (in vitro fertilization) and PGD (pre-implantation genetic diagnosis) and selecting an affected embryo for implantation.
So I think a good topic to start with is what Marque-Luisa Miringoff called The Social Cost of Genetic Welfare. Her 1991 book was probably the first I read that dealt with the social controversy surrounding, shall we say, human perfectibility? Miringoff is a sociology professor at Vassar and director of The Institute for Innovation in Social Policy. The gist of the book is to examine the changes in attitude toward the handicapped that are likely to follow the ability (of the privileged) to prevent disability. To take a common, though not technically inherited example, will we start looking even more askance at those with Down Syndrome, if we think that could have been prevented through prenatal testing and termination?
But as siblings realize, people only come in one model. That particular child could not exist apart from his or her disability—it’s a package deal. Yet, we don’t want to say a person is his or her disability. Just as none of us is his or her genome. There are many social, environmental factors at work—layers of paint upon the genetic canvas.