Archive for February, 2014

What defines a person?

February 11, 2014 1 comment

After reading this post from the GenomeWeb (, I feel a need to further the discussion. For my personal and professional interest, which is to help parents have healthy babies, it’s important to ask ourselves: what defines a person?

Well, according to the post, “Yeshiva University ethicist David Wasserman says there is no obligation to use preimplantation diagnosis for adult-onset diseases, noting that such a stance would argue that people like Baxley shouldn’t have been born”. I have trouble with the flimsy argument here. To me, the Baxley’s should and would have been born, but they could have been born free of serious diseases, no matter it’s adult onset or not. If a disease has a clear genetic cause (I’m not talking about BRCA induced cancer risks here), and such cause can be tested to ascertain clinical manifestation, there is every reason and maybe even obligation for parents to eliminate such risks for their unborn child. Let me ask this: is there any parent, when presented with a true choice ahead of time, would rather have a child with a serious disease? On the flip side, is there any patient with normal intelligence (not to mention the numerous genetic disease that affects development of children), when presented with a true choice ahead of their lives, would rather stay diseased? Or further, is there any patient with normal intelligence, when presented with a therapy that could cure their diseases with no side effects (the perfect scenario as would be on an individual basis when pre-natal/pre-conception diagnosis are done correctly), would say, I choose to stay diseased? I don’t expect zero outliers in the world whose opinions are different from most others, but I think the answer should be clear to most people.

So, Baxley’s, when powered by current technology, could have led a much happier life without the haunting diseases. I guess one would argue that Baxley’s, after pre-selection, are not the same Baxley’s that would have been born! This leads to my tagline question: what defines a person? To me, it’s not the hardware. It’s not about the genetic make ups that makes a unique person. It’s the growing up in a loving or not loving family. It’s the good or bad memories. It’s the kind or cruel personalities. It’s how this person thinks and interacts with the world that defines a person. When the Baxley’s are born, they’re blank papers, and their parents/teachers/friends/society around them shaped them into who they are. The paper itself didn’t. On the flip side, if the paper were tainted to begin with, or even torn apart, wouldn’t you rather choose a blank paper to start your artwork?

People argue about keeping diversity. Good. That’s often used as an ultra important argument when “ethicist” randomly accuse of people to be “eugenicist”. We know evolution means the bad is naturally eliminated and the good is naturally kept and flourished. What’s the point of keeping the bad when it’s meant to be eliminated? Again, I’m not arguing for genetic risks such as inherited BRCA mutations. I’m arguing for known single gene mutations that are firmly linked to serious diseases (Tay Sachs, for example). Who’s to say that in order for “diversity” to be maintained, that certain children are meant to be born with debilitating diseases, that certain adults are meant to be cursed even if it’s adult onset diseases? People use Van Gogh as an example of a diseased genius who may not have existed (and left so many astonishing artworks behind) if technology existed for his age. Well, who has asked Van Gogh whether he likes himself to have the disease and make the greatest artworks? Just because we, the “others”, want to keep the “diversity” and enjoy/appreciate such artworks, do we have the right to tell Van Gogh: you’re meant to be a great artist, though you’ll suffer personally and commit suicide sooner or later, but for the contribution to the mankind, please, sacrifice yourself!? And for people arguing lightly that “diversity” is important to keep and therefore no pre-natal/pre-conception genetic analysis should be done, have they asked themselves whether they would like their kids to be diseased? I know of Down Syndrome parents arguing that “the journey was so extraordinary that I would choose to do it again if I had a choice”. Not to discount some of them giving the comment because they truly appreciated the journey, but there is definitely a very selfish motivation for some of the others to raise that voice because if no Down Syndrome testing is done prenatally, there would be more Down Syndrome kids, and together the Down community would have more arguing power to gain more support from the society. For their kids, that’s beneficial, but this is dragging more innocent families into the community irrespective of whether they like it or not (and guess what, most of them don’t). On the other hand, in the autism community (which is known to be complicated for an accurate genetic diagnosis), due to the difficulty in diagnosis, many many families are afraid to have more children because of the unknown risk to have yet more autistic kids, and therefore had to lead rather depressing lives without the hope of a healthy kid in the family.

I’d rather we don’t have the Van Gogh’s and their masterpieces. Most of us are meant to be normal people. Asking individuals and their families to go through suffers that could have been avoided, just for the good of the “diversity” of mankind, is a different form of cruelty to me. Life is and should be an exciting journey, and the world already provides a lot of astonishing diversity. Evolution doesn’t stop simply because we’re trying to have healthier kids.

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