It has been widely reported that on Monday President Obama will overturn former President Bush's ban on embryonic stem cell research funding. This is fantastic news for a return to focusing on science and preventing personal moral beliefs influence public policy without rational arguments to back it up. But for me the victory is much more personal.
My baby sister (okay she's 22, but she'll always be my baby sister) has Cystic Fibrosis. You can find information about CF here. Basically it is a recessive genetic disorder that affects multiple systems of the body. When my sister was born in the mid-1980s the condition was considered fatal.
Thankfully she was diagnosed shortly after birth (at the time it was not uncommon for children to go years without being diagnosed) and we happened to have moved near one of the best (if not the best) CF centers in the world about 18 months earlier. Because of that and my parents' and subsequently my sister's determination to stick with her treatments my sister is in the top 1% of CF patients and has a normal expected lifespan.
Unfortunately that doesn't mean her life is easy. She has to do half hour sessions with a vest that pounds on her chest to loosen mucus in her lungs 2-3 times a day. She takes a synthetic enzyme to help absorb nutrients from food. She also developed diabetes as a result of the CF so she is on insulin. She sees multiple specialists, multiple times a year to ensure that they are maintaining her health as best as possible.
And despite all of this she still has outside problems. She is prone to respiratory infections. She has been hospitalized three times in the past 4 years for respiratory problems (thankfully not life threatening) and had to deal with college classes while doing I.V. antibiotics multiple times a day on two separate occasions. She also has a common (also non-life threatening) digestive track problem which pops up every so often resulting in multiple ER visits and one hospitalization in the past 4 years.
So why does this relate to the President's decision? Because most CF researchers think that embryonic stem cell research is the best hope for a cure for CF. They can only do so much to treat the symptoms but without treating the underlying cause (i.e. the defective genes) it is hard for any big advances in treatment.
I understand where people come from with embryonic stem cell research. If you truly believe life begins at conception then destroying embryos would be anathema. But these embryos are going to either stay frozen or be discarded anyway and there are so many people that could potentially be helped by this decision. We probably will never be able to agree when life begins - but I think we can all agree that people who are already live are most definitely human beings. Even if I did believe that conception was the beginning of life, I can't look at my sister and tell her that I think embryos are more important than her life and health.
My sister is currently making a decision on a graduate school yet her decisions isn't just about where she can best do her research, which campus she prefers or any of the other normal factors that go into it. She also has to take into account which schools come with good prescription drug coverage since her state subsidized health care will not be available when she goes out of state for school and where she will have access to a good CF center. She shouldn't have to do this - not when there is the potential for a cure.
So I applaud President Obama for his forthcoming action. Embryonic stem cell research may be a dead end, but we can't know until we try. And at least by allowing the federal government to fund all aspects of its potential we can know that we are doing everything in our power to help my sister and others who suffer from fatal or chronic conditions that may also be helped by this type of treatment.