Hermenuetics

Comments

Thanks, Ellen, for this post.

I'm all for well-informed consumers of health care products and services. At the same time, I would no more encourage someone to make such a weighty decision as whether to marry/conceive/carry a baby to term on the basis of a home-administered and interpreted test than I would favor DIY brain surgery.

Posted By: Sheila | May 14, 2010 1:39 PM

Discussions about genetic testing and such always remind me of the Jodi Picoult book _My Sister's Keeper_; a couple with one child suffering from cancer decide to have a 2nd child through IVF, after finding the "correct" embryo that will be most compatible with the 1st child's DNA. . . . all so the 1st child can have a transplant donor. As a result, this 2nd child's life is defined by her older's sister's illness.

Like so many people, the parents make an idol out of having a physically healthy life rather than seeing that life can be meaningful even in the middle of sickness. As you said, our human identity goes beyond our genes and physical capabilities. Thank God for that.

Posted By: Laura Droege | May 14, 2010 4:06 PM

I'm the author of a new book, "The Match: 'Savior Siblings' and One Family's Battle to Heal Their Daughter." It's the real-life version of "My Sister's Keeper" (which is fiction). You might like to read it as it is full of the history of PGD, interviews with the pioneers of the technology, as well as the ethical concerns of creating a child to save another, of using PGD for inherited disease screening, and for other possible nonmedical uses. Visit my website, bethwhitehousejournalist.com, for more about the book and the Trebing family, the family I followed as they created a life to save a life.

Posted By: Beth Whitehouse | May 14, 2010 8:19 PM

I'm the author of a new book, "The Match: 'Savior Siblings' and One Family's Battle to Heal Their Daughter." It's the real-life version of "My Sister's Keeper" (which is fiction). You might like to read it as it is full of the history of PGD, interviews with the pioneers of the technology, as well as the ethical concerns of creating a child to save another, of using PGD for inherited disease screening, and for other possible nonmedical uses. Visit my website, bethwhitehousejournalist.com, for more about the book and the Trebing family, the family I followed as they created a life to save a life.

Posted By: Beth Whitehouse | May 14, 2010 8:21 PM

I am SO flippin tired of other people (groups) deciding what I can and cannot buy... Let me get this straight; I can't go buy a test that might tell me if I am predisposed to lung cancer but, I can go buy cigarettes and try my luck??!!

I would really like to know a couple of the terrible things that could happen by someone assuming the wrong things from a test like this.

All of us as Americans have learned to "settle" and let someone else make decisions for us.

Posted By: Jimmy | May 14, 2010 9:48 PM

As more knowledge of genetic risk leads to more prospective parents using technology like PGD, our overall medical costs will rise.

Actually, that is factually incorrect. The cost of PGD is very small relative to the financial devastation of lifelong incurable disease.

http://www.fertstert.org/article/S0015-0282(06)01740-7/abstract

OBJECTIVE: CF is the most common lethal genetic disease in Cauca- sians in the US. Current guidelines recommend pre-conception and/or prenatal CF screening of parents. Although prenatal testing with possible elective termination is cost effective, many couples prefer to avoid the moral dilemma and psychological trauma of terminating a pregnancy. This may be a major reason contributing to the continuing birth of ~1000 children affected with CF in the US each year. For most couples at risk for passing on genetic diseases to their offspring, PGD is a preferred strategy to prevent the birth of affected children compared to aborting an affected fetus or raising a sick child. We have performed a cost benefit analysis where the direct medical expense of using IVF-PDG by all carrier couples has been compared to the annual and lifetime medical costs of treating CF patients. DESIGN: Cost benefit analysis. MATERIALS AND METHODS: Direct cost of performing IVF-PGD was based on average costs in the Midwest. Success rates were projected from 2000-2005 data accumulated at RGI for IVF-PGD for CF carriers. Current life expectancy of CF patient is 37 years (CF Foundation - 4/21/06) and the estimated average annual direct cost of medical care for CF patient was $55,537 in 2000 (CF Foundation, unpublished data). Since CF is an autosomal recessive disorder, we calculated that for 1,000 babies born with CF each year it would require performing IVF-PGD on at least 4 times that number of couples. A decision making model was developed. A cost benefit analysis was then performed by comparing the annual cost of performing IVF-PGD for theoretical 4,000 couples to the annual direct medical costs saved by avoiding the need to treat 1,000 new CF patients each year. RESULTS: Take home healthy baby rate per IVF-PGD cycle (n=114) initiated to prevent CF with RGI was 31%. Treating 4,000 carrier couples for 1-6 cycles of IVF-PGD per year with a 31% take home baby rate would result in 3568 deliveries (89% deliveries in 4,000 hypothetical carrier couples) of healthy babies including the birth of 892 non affected children (25%) who theoretically would have been born otherwise with CF. The calculated total cost per patient for lifetime is $2 million (M), and for all 892 CF patients 1.8 billion dollars. The estimated direct cost for all IVF-PGD cycles (n=11,511) was $235 M, and $263,000 would be spent to have one healthy baby instead of a sick child with CF. This would save $50 M annually that would have been expended in treating 892 new CF patients, or total lifetimes saving of $1.55 billion. The break-even point is expected after 4.7 years, and from this time on, hundreds of millions of dollars would be saved each year (i.e. $100 M, $244 M, $531 M, and ~$1 billion at the 7th, 10th, 16th and 26th years, respectively) after initiating IVF-PGD program for all CF carriers in the US. CONCLUSION: Offering IVF-PGD to all CF carrier couples who wish to conceive without facing the dilemma of possible pregnancy termination or raising a sick child is highly cost effective and will save hundreds of millions of direct health care dollars annually. The potential implications of implementing IVF-PGD for all CF carriers in the US are remarkable in the life of a family. Parents would not have to alter their reproductive plans and they may circumvent the psychological and financial burden of having an unhealthy child. Using this strategy, CF, as well as other genetic disorders, may become preventable diseases.

Posted By: factcheck | May 15, 2010 6:58 AM

Just to clarify what I meant by saying "overall medical costs will rise."

I was not saying that widespread use of PGD would necessarily cost more than lifetime care of children with genetic disorders.

I was responding, rather, to the overly simplistic cost-benefit analysis present in many news articles about DIY DNA tests. A common calculus is to say that these tests cost only a few hundred dollars, while lifetime care costs millions, so therefore these tests save millions. But as I wrote above: "There are a host of costs that lie between" the inexpensive DNA tests and lifetime care. When people choose to use PGD in response to finding out they are carriers for genetic disorders, that costs something. So use of these tests will lead to some increased costs as more people use PGD in response.

The cost-benefit analysis above addresses the cost impact of PGD use on ONE genetic disorder: cystic fibrosis. The Counsyl test I mentioned in the article tests for 100 disorders. The analysis above also assumes that all those who use PGD to avoid CF would otherwise actually have an affected child, whereas the actual risk of inheritance in a carrier family is 25%.

But I'm not a statistician. Perhaps a statistical analysis could illustrate that even if everyone at risk of genetic disease used PGD, the costs would still be less than lifetime care. Perhaps. And there are a host of other cost-benefit analyses that could be done regarding these tests, such as looking at the costs of consumers going to their doctors brandishing a test showing they are at risk of something and requesting a battery of tests and preventive measures that may or may not be called for.

But the cost-benefit calculus is only one troubling aspect of these tests, and for me, not even the most troubling. What's more troubling are the moral, emotional, and theological questions raised by increasing genetic knowledge in a culture that prizes health, success, and independence above all.

The statistical analysis in the comment above is a great illustration of the justification that many people offer for PGD: It saves parents the anguish of dealing with an unexpected prenatal diagnosis and raising a sick child. But PGD is not a value-neutral act; it requires destruction of embryos. I am not absolutely against PGD (those who know my story know that I actually used it, unsuccessfully). But I believe it calls for serious ethical reflection, which simple cost-benefit analyses fail to provide. As Christians, we need to think hard about whether avoiding a sick child is worth doing, whatever it costs--financially, emotionally, ethically.

Posted By: Ellen | May 15, 2010 8:27 AM

Correction to my earlier comment: The study cited in the comment above mine does take into account the 25% inheritance rate of CF.

Posted By: Ellen | May 15, 2010 10:08 AM

While this kind of thing is getting out of hand for now at least people are free to make their own choices. The problem with our medical system is that it is run by big pharma, big food companies and big medicine. Many or our freedoms are taken away to the extent people actually have to go outside the US to obtain less expensive and more effective treatment. Leave people alone and let them be free.

Posted By: Mia Isagenix | August 29, 2010 9:34 PM