June 29, 2004
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
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
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
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
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
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.