Who Are You to Play God?

This week I saw a remarkable video with Morgan Radford on the Today Show about a celebrity couple who explained how they are working to end a genetic disease.  Joe Smith, a Houston Astros pitcher, and his wife Allie LeForce, a sports reporter explain in the video how they are using PGD (Preimplantation genetic diagnosis) IVF to prevent Huntington's Disease from being passed on to their child.  Huntington's Disease is debilitating, causing loss of memory and motor skills and usually appears between the ages of 30-50. 

The child of a person with Huntington's Disease has a 50% chance of developing it him or herself.  Joe Smith's mother suffers from the disease and so he and his sister have a 50% chance of developing it as well.  30,000 Americans suffer from the disease but there are estimates that up to 200,000 may develop it.

In PGD IVF, embryos are genetically tested before implantation to determine if they carry the gene for a variety of genetic diseases.  Only those embryos that don't carry the gene are then implanted in the womb.  As explained in the video, if everyone with this disease followed this procedure, the disease could be 100% eradicated, at least in the case of Huntington's.  But the procedure can cost $30,000.  The couple created a foundation to help fund the treatment for couples touched by this disease.

There are other diseases which can be screened through this method, including those more prevalent among Ashkenazi Jews like Tay Sachs Disease and Gaucher's Disease.  I learned about this screening recently at a presentation from The Victor Center in Miami.  A staff member shared her moving personal story involving Tay Sachs Disease.  Children who grow up with these diseases can have disabilities; some of the diseases are incurable, leading to early death.

For those who are not familiar with it, according to their website the Victor Center for the Prevention of Jewish Genetic Diseases at Nicklaus Children's Hospital "provides access to comprehensive genetic education, genetic counseling services and affordable genetic screenings for individuals in South Florida at risk of being carriers of a gene mutation for at least one of the preventable Jewish genetic diseases."

Joe Smith and Allie LeForce mention in their video that they are frequently criticized for "playing
G-d," by choosing only a healthy embryo to implant with IVF.  Many people feel that PDG IVF is wrong because humankind is preferring one child over another child, when all children should be loved and cared for equally.  The two beliefs are not inconsistent with one another--one can love a child with a disease just as much as a child without a disease AND at the same time, try to prevent the disease in the first place.

Psalm 90:17 emphasizes that we are here to do G-d's work:

וִיהִ֤י ׀ נֹ֤עַם אֲדֹנָ֥י אֱלֹהֵ֗ינוּ עָ֫לֵ֥ינוּ וּמַעֲשֵׂ֣ה יָ֭דֵינוּ כּוֹנְנָ֥ה עָלֵ֑ינוּ וּֽמַעֲשֵׂ֥ה יָ֝דֵ֗ינוּ כּוֹנְנֵֽהוּ׃

"May the favor of the Lord, our G-d, be upon us; let the work of our hands be established; establish the work of our hands!"

G-d does not want us to sit on our hands and refrain from preventing terrible suffering.  G-d wants us to help end suffering.  There are a lot of things that G-d cannot do without us working with our hands to complete them.  This is why, from a Biblical perspective, I believe we are enjoined to be healers in whatever way we can.  

For those who suffer from disease or disability, we still love them just as much as any other person.  This is important to emphasize this month in particular because February is Jewish Disability and Inclusion Awareness Month.  According to chabad.org the mission of Jewish Disability Awareness and Inclusion Month is to "unite Jewish communities worldwide to raise awareness and champion the rights of all Jews to be included and to participate in all aspects of Jewish life like anyone else."

My prayer this month is that people with disabilities will be fully welcomed into our communities, and that at the same time we will work to prevent disabilities in the first place.