Tag Archives: PGD

A Thoughtful Thursday

I’ve come across a few chronic illness themed articles recently that I found so thought provoking that I’d like to share them with you. All of them focus on chronic illness.

A Marf whom I admire, Angela, introduced me to this first article. Unspeakable Conversations was written by a severely disabled lawyer, Harriet McBryde Johnson. In it, the passionate disability rights activist discusses her debates with Prof. Peter Singer, a Princeton philosopher who advocates infanticide (among other things). The heart of their disagreements comes from the question of whether those with disabilities are inherently worse-off than able-bodied people.

I’ve said many times that I wouldn’t have wanted my parents to choose not to have me just because I have Marfan. But, does having Marfan make me worse-off? In some ways, I suppose that it does. I have pain that my able-bodied friends do not. I’ve been discriminated against (especially in graduate school!) based on my “disability” status. I don’t have some of the options for pregnancy/birthing/babywearing that other women have. However, I’ve had lots of opportunities that many of my friends haven’t: the chance to travel to two other countries, presenting research, completing a Masters degree, having a baby, etc. This comparison didn’t help me answer the question at hand, as it left me with an unclear answer.

I decided to remove Marfan and insert other things about me to see if the negatives still held true. Does being biracial/LDS/female sometimes make me worse-off? Have I ever been discriminated against for these things? Has anyone ever made an unfair assumption about me based on these traits? Have any of them affected my ability to make choices? I would answer yes, but I don’t think most people would say that I am worse-off for being any of those things (at least not in a “you’d be better off dead” sort of way). Therefore, I don’t think I’m worse off for having a chronic illness.

The second article is actually a website: Choices that Matter. The author, Ellen Painter Dollar, has another connective tissue disorder – osteogenesis imperfecta – as does her daughter. Her blog examines “ethics and theology of assisted reproduction and genetic screening,” as well as living with her disability.

Finally, a short essay on Aspergers syndrome that my husband, who has the disorder, wrote was featured on ScientificBlogging.com. I’m really proud of him!!!

What do you think about these articles? Do you agree with any of them? Why or why not?

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Shoddy Journalism

I have a Google Alerts out for articles on Marfan syndrome, and I was shocked and then angry to come across this UK Times Online article: Embryos Destroyed for ‘Minor’ Disorders. Even more upsetting to me was that the article has been picked up by several other papers and websites. I debated whether or not to blog about this, but Mark convinced me last night that the other side needs to be heard (aside from the anonymous comment I left on the article).

Let me first explain that I am not providing a commentary on pre-implantation genetic diagnosis (PGD). Whether or not I support PGD is irrelevant. My beef here is with shoddy, biased journalism.

I could tell by the title that this wouldn’t necessarily be a fair piece. Destroyed is a very emotionally charged word, and who determines what minor means?

The author, Lois Rogers, says that there is a debate because fertility regulators in Britain are allowing 100 different disorders to be screened for using PGD, “including many illnesses that are not life-threatening.” Rogers then goes on to hold up Marfan syndrome as a genetic “defect” (quotations hers) that isn’t life-threatening and (it’s implied) shouldn’t be included on the PGD list. She defines Marfan as “a congenital weakness of connective tissue that can lead to abnormal growth.” That’s it. She conveniently leaves out the parts about how Marfan causes abnormal growth of the AORTA, how it IS life-threatening, how some people with Marfan have crippling pain and must go on disability early on in life. I try to take a positive view of Marfan, and I admit I’m on the less-severe side of the spectrum, so I am always hesitant to discuss all the terrible parts of the disorder because I don’t think it’s healthy to dwell on that. However, it’s the truth: Marfan is serious stuff. I’ve lost 10 friends to complications of Marfan. Most of them were very young…2 were just teenagers. People like Rogers do our cause a disservice by minimizing the severity of Marfan.

Beyond that, this is just really poor journalism! How much effort would it have taken Rogers to research Marfan? I think she’d have found it’s actually a poor example of the point she’s trying to make. Isn’t research a journalist’s job?! And, if this article really was unbiased, it would also show the point of view of people who support PGD. The closest it comes is by Ms. Harris’ quote (who has Porphyria), but did not use PGD to conceive her children: “If you have lived with someone unable to function and on constant morphine because of the pain, you would take a different view.”

I plan on writing a letter to the editor of the Times Online about this article. We shouldn’t let anyone get away with inaccurate reporting on Marfan. If you’d like to join me (the more the merrier!), you can contact them at letters@thetimes.co.uk. Make sure to include your postal address and daytime telephone number.

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