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One Foot in the Future
by Karen Reed-Matthee

In the novel My Sister’s Keeper by Jodi Picoult, a family struggles with the fall-out of having genetically engineered a daughter to prolong the life of her sister. Since birth, 13-year-old Anna, who is a perfect match for her sibling, has donated platelets, blood, an umbilical cord and bone marrow to Kate, who suffers from a rare form of leukemia. When Anna’s family considers having her donate a kidney, she hires a lawyer to represent her in a medical emancipation suit to allow her to have control over her own body.

While this is a work of fiction, the countless complex questions Picoult raises in the novel are not as futuristic as we may think, says Kathryn Hinsch, founder of the Seattle-based Women’s Bioethics Project (WBP). Scientists aren’t producing designer babies yet, but the impact of human gene research is becoming increasingly relevant to our lives and is just one of the issues under the project’s microscope.

The think tank was launched two years ago to spur women to learn how biotech advances affect them (now and in the future) and to have a voice in how these technologies are regulated. Because the majority of decision makers around bioethical concerns are male – congressmen, doctors and scientists – it’s important that women get up to speed now if they want to be represented in these matters, Hinsch advises. “These are issues that are core to everyone’s lives, but particularly to women’s lives because of how our bodies are affected.” She adds, “It’s about having our foot in the future.”

Having raised $200,000 and formed both West Coast and East Coast advisory boards, the WBP is an increasingly important catalyst and resource for bioethical debates. Hinsch has given a speech on women’s bioethics at the new bioethics center at the United Nations headquarters in New York, and a board member has testified before the Food and Drug Administration on the ethics of allowing young girls to obtain breast implants. The group also has received a Ford Foundation grant to plan the agenda and faculty for a first-ever bioethics seminar for women state legislative leaders in Washington D.C. this spring.

Because the WBP has a progressive approach to its mission – “We are pro-science and pro-choice,” says Hinsch – it has received a welcoming reception from the biotech community. Hinsch made a point at the outset of sitting down with leaders from the industry and explaining the project’s ideology and goals. “I think scientists who want to change the world and make it a better place want to do it in an ethical way,” she says. And when they’re working on new technologies, Hinsch adds, “they want to know if there will be any problems or opposition up front.” While the WBP has not yet formed partnerships with any biotech firms – something Hinsch would like to explore – it seeks “to engage them in the bioethics dialogue,” she says.

Stewart Parker, one of the few female CEOs in the biotech industry, recalls Hinsch inviting her to lunch in the project’s early days. “She was concerned and nervous as to whether the biotech community would embrace and support the organization,” says Parker, who heads Seattle-based Targeted Genetics Corp. “I think she was refreshingly surprised by my response and those of others in the community,” who have watched Hinsch’s progress “with awe.” Parker sits on the advisory board of the Biotechnology Industry Organization, which is setting up a committee to discuss bioethics. “Most of us feel it’s not our place entirely to have a decision-making role in what happens to these technologies,” she says.

So far, Hinsch notes, the only opposition the project has received has been from groups “that see bioethics as a way to extend their conservative agenda.” In a report released last year, Hinsch argues that conservative groups are attempting to dominate bioethical issues surrounding emerging technologies. She states that “the opportunity to influence the direction of public opinion is up for grabs. Essentially, whoever gets there first will frame the debate on these issues and will affect us all for decades to come. To date, only extremely conservative and overtly religious groups have devoted substantial resources to pushing a broad bioethics agenda.”

While the WBP hopes involving women will expand the bioethics debate, getting the organization’s message across can prove difficult when the issues may seem more like sci-fi than real life, concedes Hinsch and her supporters. “Bioethics seems to be a black box in terms of what it is and why anyone should get involved,” says WBP board member Robin Shapiro, president of Health Advocacy Strategies and former Immunex marketing director. “I love trying to understand all the different ramifications of these thorny issues.” Shapiro’s role with the project is to help make bioethical issues accessible.

One way the group plans to do that is through a national women’s bioethics book club, to be launched in Seattle this month by author Jodi Picoult. Besides Picoult’s book My Sister’s Keeper, Margaret Atwood’s Oryx and Crake and Kazuo Ishiguro’s Never Let Me Go will be on the WBP Web site’s initial recommended reading list. These books, along with movies like the recent film of John Le Carre’s novel The Constant Gardener, prove that bioethics is “becoming more and more mainstream,” says Hinsch. “Every decade since the sixties has had its bioethical crisis, but now those crises have multiplied. There are court battles over frozen embryos, pet cloning…the number of issues are enormous.”

Hinsch’s own interest in bioethics began during her 12-year stint at Microsoft Corp. and led her to pursue a master’s degree in bioethics at the Harvard Divinity School. There, she became more and more concerned that women were not adequately represented in the scientific research that could most impact their lives. She saw the potential for major technological breakthroughs related to genetic testing, childbearing and living longer, which impacts caring for the elderly. Hinsch hit on the idea of a think tank – “a university without the pesky students” – to engage people on the issues and empower them to influence public policy. She took a leave from her studies to start the Women’s Bioethics Project.

The areas of concern that have emerged as priorities for the group involve women’s health, reproductive technologies and neuroethics, which deals with understanding how the brain works. “As we discover ways to enhance or eliminate certain behaviors or personality traits through pharmacological or genetic means, we must be vigilant in helping to de?ne the principles that will guide policy,” states the WBP Web site. The wide variety of issues that fall under the women’s health category includes women’s participation in medical research, the impact of aging and care-giving, and end-of-life decision making. The project will monitor reproductive technologies such as human gene modification (designer babies), sex selection, pre-implantation genetic testing and in vitro fertilization, and will “ensure that women’s voices, life experiences, concerns, and priorities are heard on both national and international levels,” the Web site says. What it all boils down to, Hinsch says, is this: “We hope to raise issues in a way to come up with good public policy solutions.”

For more information about the Women’s Bioethics Project, visit their Web site at www.womensbioethics.org.

Karen Reed-Matthee is the editor and co-founder of Seattle Woman.

©2006 Caliope Publishing Company