“Why did you make me this way?!”

Recently, Jon Holmlund brought us up to date on an effort in Russia to proceed with CRISPR gene editing aimed at eliminating deafness. Coincidently, a recent MedPage article was posted regarding the ethics of using pre-implantation genetic diagnosis and IVF to purposefully select FOR an embryo with genetic deafness for a couple, both of whom were deaf. Both links discuss some of the ethical problems with using medical reproductive and genetic technology for these purposes. While we presently lack the ability to use polygene scoring to accurately “produce” the babies we want, I want to use the remainder of today’s blog to consider what obligations, if any, a genetic engineer (or parents that use their skills) may have toward future children designed using these growing array of genetic technologies.

Deafness seems to me to be rather curious in that it is considered either a serious disability or a desirable trait, depending upon your cultural worldview. No one in any culture would purposefully select for cystic fibrosis or Tay-Sachs diseases for their child. In fact, most want to use medical reproductive and genetic technologies to eliminate these diseases. On the other end of the genetic trait spectrum, some parents want to use these same technologies to purposefully select for more trivial traits for their children – hair and eye color, for instance. Given the triviality of these traits, I hear no one mounting an effort to genetically eliminate any particular hair and eye color. Perhaps I am living a sheltered life?

Nonetheless, with regard to deafness, prior to the promises of our new reproductive technologies, if you were born deaf and did not like it, you could only shake your fist at God or Nature. Now (or very soon), you can shake your fist directly at another human, such as your regional genetic engineer (or your parents who purposefully used her technological skills) and demand a direct answer as to why they purposefully made (or did not make) you deaf. Maybe this angst will be more widespread for the many more trivial traits such as eye or hair color rather than something more significant like deafness?

Building a child is about to become much harder for parents as they become directly responsible for both interior (genetic illnesses) and exterior (hair and eye color) design issues.

“Why DID you make me this way?!”

“Why did YOU make me this way?!”

I wonder how many genetic designers (or the parents that will ultimately bear the direct responsibility for having used the technology) really want that type of responsibility?

Is there already fine print in PGD-IVF contracts holding the doctors/scientists/geneticists harmless for the choices the parents make?

I can’t wait for the late night TV commercials: “Were you born with brown eyes and feel emotionally scarred because you have always wanted blue? Call our law offices as you may be entitled to financial compensation …”

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