The Power of Pregnancy -- Working Together, Women Can Help Make it Safer

05/02/2009 05:12 am ET | Updated Nov 17, 2011

Every year, 130 million babies are born around the world. Yet little is known about why some women sail through their pregnancies, while others encounter issues such as infertility, miscarriage, pre-term labor, preeclampsia and gestational diabetes. Giving birth, whether in medically-advanced countries or in the developing world, is shrouded in mystery when it comes to predicting these conditions, and women have to face pregnancy with a "wait and see" approach to whether it will go well, or not. Modern medicine has certainly improved survival rates during childbirth, but research into identifying why some moms -- and which ones -- will go on to develop certain complications has been underserved.

According to CDC figures, one woman in eight who gives birth is hospitalized during her pregnancy due to complications.

23andMe is launching a new research community to address that research gap. Pregnancy is difficult to study, partly because it is such a sensitive time in a woman's life. Researchers, institutional review boards and study participants have to balance the potential social benefits of any research against risks not just to the women themselves, but their developing fetuses as well. Often they decide the risk isn't worth it. Whether this has to do with men making the majority of decisions around research directives is unclear but oftentimes speculated. Up until recently, most women's health issues took a backseat to men's.

There are also economic forces at work. Pregnancy is not a chronic and widespread condition like diabetes or high cholesterol. About four million American women will give birth this year, and those who do develop complications will require treatment for a few months at most. Compare that to diabetes: there are an estimated 23.6 million Americans with the condition, and the vast majority of them will have it for the rest of their lives.

Even this argument may be less clear-cut than it appears, however. Because of epigenetic effects, what a mother experiences during her pregnancy could have long-term health implications for her child, even into that child's adult life.

So we're inviting moms and mom-to-be to help us improve the experience of pregnancy for all women by changing the way research is done. We believe mothers like us, and soon-to-be-moms, would prefer to carry out their pregnancies armed with as much knowledge as possible, for the sake of themselves and their families. We've created a place where women can get the information they seek and drive research forward at the same time. By tapping into the broad reach of the internet, used in combination with the latest genetic analysis tools, we've created a powerful new means of not just distributing information, but for generating it as well.

The hope is that this research effort will lead to discoveries about the genetic roots of pregnancy complications and, in turn, to improved preventive care and healthier future pregnancies.

We founded 23andMe in part because we believe that everyone should have access to their genetic information. We also believe that grass roots initiatives can transform research and focus energy on important areas of health and wellness. By combining individuals' raw genetic data with their responses to easy, online surveys, we expect to find associations that could lead to new diagnostics and improved treatments.

Scientists basically do the same thing when they perform massive searches for genes associated with diseases. We think we can do the same thing cheaper, faster and better by getting our customers directly involved. Most researchers and physicians agree that genetic information will become integrated into mainstream medical treatment but there isn't a clearly defined path to that vision. By developing a more consumer-integrated research mechanism, our goal is to close the gap from the concept of personalized health care to reality.

The bottom line is that we need more data connecting our genetic profiles to what diseases we get and how we respond to drugs. It's not hard to fathom how much better our lives will be when people and their physicians have genetic barcodes indicating which drugs will work for them -- and those that don't -- and what diseases they're likely to develop. Knowing in advance the risks for pregnancy complications is just as important to us.

Earlier this month, 23andMe launched an initiative that will genotype 10,000 people with Parkinson's disease in an effort to learn more about how genetics may influence that condition. We don't know yet what will come of that effort, but every person who enrolls has a very real chance of making life better for millions of people in the future. And we've already reached 20% of our goal, a recruitment rate unprecedented in traditional studies.

We're excited to see our pregnancy community grow at a similar pace and have moms from around the world joining together and sharing information about their experiences. In passing their DNA down to the next generation, mothers literally give an essential piece of themselves to their children. Imagine how much more valuable that legacy will be when we really know what it means.

For more information, please go to our website.