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Hinsch Transcript

Inaugural Reception Speech

Seattle, Washington
June 29, 2004

Kathryn Hinsch, Founder

Welcome and thank you for joining us. I'm Kathryn Hinsch, your host this evening. Our goal tonight is to introduce you to the Women's Bioethics Project, listen to your feedback, and gain your support.

I have always been fascinated by the impact of technology on society-first while working in politics in the early '80s, then during my 12-year career at Microsoft, and most recently while pursuing a Master of Divinity degree at Harvard. Technology offers great improvements in the way people work and live, but it also demands that we examine the fundamental question of what kind of society we want in the future. The rapid pace of biotechnology is quickly exceeding our ability to understand its impact and has the potential to cause unintended consequences.

Biotechnology has a profound affect on us politically, spiritually, and culturally- and it forces us to answer the tough questions: What is life? What does it mean to be human? What does it mean to be a mother if children are born outside the womb? What implications do our genetic make-ups reveal? How does access to the new technologies differently affect people in terms of gender, race, and class? We are already grappling with many serious and wide-ranging bioethical issues involving cloning, stem cell research, in vitro fertilization, and prenatal identification of genetic disorders, just to name a few. Are we prepared?

We a developed set of questions-which are posted around the room and in your program and on the website -to give you a sense of what is not being asked in the broad public debate. These issues. from stem cell research to cosmetic surgery, all have significant impact on society in general and women's lives specifically. They need to be addressed. Dr. Holland will discuss the stem cell research question in more depth later this evening, but I want to take a couple of the other questions now and talk about what they mean.

Who is harmed when women are excluded from disease studies and clinical trials of new drugs? Everyone. Shockingly, women have been excluded from heart disease studies until recently. Because of that, we didn't know when women were having heart attacks, because their symptoms and risk factors were different than men's. Doctors didn't have the information they needed to treat their patients, countless women did not receive the life-saving care they needed and were left untreated, and many died. Families suffered the loss of a mother, sister, or daughter.

The gynecological health of HIV-positive women was also not studied until recently. It turns out, as in the case of heart disease, women who have AIDS often present differently from men who have AIDS; women have PID, cervical cancer, or abdominal pain, while men often present first with sarcoma and other symptoms. What this means is that HIV-positive women in this country-who are often drug users, poor, and minority women-have not received the same level of care as men. They have not had the same access to early diagnosis, which could have made them eligible for life-saving drugs and other support services.

We cannot talk about bioethics and women without addressing reproductive issues. For decades we have been engaged in the pro-choice versus pro-life debate. But what does that mean in light of biotechnological advancements? I have been a lifelong supporter of women's reproductive freedom. That said, we must be willing to leave our entrenched positions to engage in a dialogue about reproductive freedom will not be easily reduced to pro-choice or pro-life positions.

For example, who decides the fate of a frozen embryo if the parents can't agree? What if the father wants the embryo destroyed, but the mother wants it implanted into her or someone else's uterus? What is the pro-choice position here? Currently, these types of decisions are being made by the courts without the benefit of public debate.

We tend to think of surrogate mothers as someone having a baby for a friend or one who really enjoys being pregnant and wants to give back in that way. The surrogate would be artificially inseminated by the father's sperm, carry the child, and then turn the child over to the couple. With assisted reproductive technology, we can now harvest an egg from one woman, fertilize it outside the womb, and then implant it into a surrogate womb for gestation. Certain states don't allow women to enter into surrogacy contracts, yet others, such as California, do. An unintended consequence of all this is that increasingly minority and immigrant women are serving as "host wombs" for wealthy white couples. Is that reproductive freedom or economic exploitation?

Babies can now survive outside the womb at 24 weeks, and we expect that number to decrease. What if technology allowed us to perform an "eviction" instead of an abortion, so that we could to safely remove fetus without destroying it and implant it into another woman or an artificial womb? Under what circumstances would we compel a woman to have one procedure instead of the other? We need to be willing to think about these issues in a completely different way than we have in the past. These are not science-fiction scenarios. We must have the courage to tackle these issues, ask hard questions, and be creative with our solutions.

Right now there are people with different value systems that are weighing in, framing the debate, and if we don't get involved it is they, rather than us, who will influence the course of public opinion. The good news is that with bioethical issues we still have the opportunity to get ahead of the curve. If we act quickly, we will be in a position to anticipate rather than react to problems, and ultimately influence the course of the next century for the good of the entire society. The time to act is now.

How are we going to do that? We are establishing an independent, non-partisan public-policy think tank modeled after influential organizations such as the Brookings and Cato Institutes. This think tank, known as the Women's Bioethics Project, will promote the thoughtful application of biotechnology to improve the status of women's lives and seek to protect vulnerable populations by anticipating unintended consequences, safeguarding women's bodies from harm, and ensuring that women's life priorities are recognized.

Surprisingly, there are no think tanks or organizations of this kind. In fact, just to give you some perspective on think tanks in general, of the top 350 think tanks in the world-and I have directory of them right here-there is only one that has been established to focus on the status of women in general, let alone women and bioethics, and I say, "Hats off to our sisters in Lithuania!"

The other fact we need to keep in mind is that a few of these think tanks and other advocacy groups, often coming from an extremely conservative and overtly religious point of view, have added bioethics to their public policy agendas and are actively framing the public debate.

The WBP will fund research and analysis to examine bioethical issues from the perspective of women and explore the impact these issues have on society generally, and on women's lives specifically. We will research the issues from both a national and international perspective.

We will proactively distribute findings through traditional and nontradional media and reach out to opinion makers to frame the dialogue so that women's perspectives are included in proposed policy, in media coverage, and public debate of bioethical issues.

In addition, most bioethical debate today is currently confined to narrow slices of academia and the medical community. Policy policy discussions often happen without the benefit of those debates. Our strategy is to serve as a bridge between scholarship and policymaking.

As a research institute, we will not lobby on behalf of specific legislation. Instead, we will work with other organizations to educate and advocate on behalf of women on bioethical issues. For example: regarding the issue I raised about surrogate mothers, an immigrant rights organization might use our research to provide justification for implementing protective legislation.

To further increase our effectiveness, we will maintain close working relationships with a wide range of academic institutions and bioethics centers as well as the biotech private sector and the scientific community. Yet, as an independent think tank, we will retain the freedom to address tough issues and advance our unique perspective.

Over the next six months we will finalize our board of directors, bioethics advisory council, and public affairs committee. I hope many of the people in this room will consider joining us. We will launch three kick-off projects that you'll hear about later tonight, travel around the country to seek corporate and foundation support, and complete our business plan.

Tonight you will hear from members of the Women's Bioethics Project advisory board who will share their perspectives on bioethical issues, their support for the Women's Bioethics Project, and how you can join us in our groundbreaking effort to launch the first bioethics think tank devoted to ensuring women's voice and experiences are heard.

Unfortunately, Dr. Wylie Burke has had a family emergency and is unable to be with us this evening. Dr. Burke has asked Dr. Patricia Kuszler, MD, JD, Associate Dean, University of Washington School of Law and Adjunct Professor in the Department of Medical History and Ethics to speak on her behalf. Dean Kuszler joined the UW faculty in 1994 to teach in and develop a Health Law program after practicing Health Law with Hogan & Hartson in Washington, D.C. Prior to pursuing a career in the law, she practiced emergency medicine in New York and Connecticut and later served as a medical director for Blue Cross & Blue Shield of Connecticut. Her primary teaching and research interests include health care finance and regulation, health insurance fraud and abuse, research misconduct, and biotechnology and the law.

Please join me in welcoming Dr. Kuszler.

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