Transparency, trust, and diverse community participation are critical to proper ethical use of biotechnologies. Full disclosure of the policymaking process and extensive public engagement are a must.
The American public needs a seat at this table.The Obama administration has already demonstrated a deep commitment to public participation and transparent government is its pioneering inclusion of the public during the transition process through change.gov, in the first 100 days through whitehouse.gov, and in the economic recovery process through recovery.gov. By establishing public access to government decision makers and using innovative communication technology, this administration has actively encouraged and solicited unprecedented public participation and accountability. Now that restrictions on federal funding for stem cell research have been lifted, it is time to develop a broad and deep dialogue with the American public to determine our shared purpose and conscience with regards to human biotechnologies -- when and how we should use these new scientific discoveries, and in some cases, if we should use them at all, as in the case of reproductive cloning. Transparency, trust, and diverse community participation are critical to this project: technologies that can lead to scientific racism and eugenics, the exploitation of vulnerable women, the commodification of children, genetic determinism, and the elimination of people with specific types of disabilities cannot be left to experts or commercial interests in small meetings. Full disclosure and extensive public engagement is a must: confidence and commitment to responsible new policies can develop only through inclusion, participation, and transparency. For the last four years Generations Ahead has facilitated stakeholder dialogues among a variety of constituencies and across different perspectives. We have brought together reproductive rights advocates to discuss possible limits to reproductive freedom related to questions about concerns such as trait selection and compensating women for selling their eggs for research and fertility. We have hosted disability rights advocates together with reproductive rights advocates to discuss how we can value people with disabilities in the face of increasing options to reproductively deselect for disability. And we have brought criminal justice and racial justice advocates together to explore ways to use DNA forensic technology and databases to protect communities without violating privacy or leading to increased racial bias in the criminal justice system. These conversations to clarify values and policy have been complex and difficult, but necessary. Through dialogue across interests, participants have increased their understanding of intended and unintended consequences, and been more willing to include complexity in their political positions. Previously held deal-breakers have softened through deeper understanding and by focusing on shared values and areas of agreement. Exploring the complex ethical challenges posed by human biotechnologies and developing a common purpose is critical for creating an informed public with a shared commitment to any public policy governing the responsible uses of these technologies. We need more of these discussions with stakeholders, with many more constituencies participating, and across many more differences. The American public needs a seat at this table and a stake in this shared purpose of how to balance the benefits of biotechnological discoveries with the risks involved in their ongoing uses. I propose two ways to make this happen. First, utilize and build on the administration’s use of the Internet to create an inclusive Public Consultation on Responsible Guidelines for Human Biotechnologies process that lives online at responsiblebiotechnologies.gov. This would create the space for President Obama and his advisors to share their vision and policies for responsible guidance and oversight and encourage a robust and ongoing dialogue between the public, scientists and the government about the “proper guidelines and strict oversight” that President Obama recommends. This kind of public consultation would allow for the inclusion of multiple perspectives and alternatives, could help identify unintended effects to diverse constituencies, and provide transparent ways to balance opposing interests. Second, and this is critical for authentic community participation, the administration must implement a system for ensuring diverse community representation in this process. While many scientists and industry groups are already well-staffed and well-organized on these issues, the American public has not systematically participated in these kinds of discussions. In the administration’s inclusion of public voices in the transition and recovery process, a systematic way of synthesizing multiple public perspectives has been missing. And because there has been no systematic synthesis, there has been no accountability as to whether the administration has included those public concerns or not. To ensure effective community participation, I recommend the formation of a National Community Representative Committee. This committee would be responsible for actively gathering input and feedback from multiple constituencies, particularly groups that have not historically participated in science policy, but whose lives would be intimately effected by these developments. This includes communities of color, people with disabilities, women, Indigenous peoples, and lesbian, gay, bisexual, and transgender people. This gathering of information about issues and concerns about human biotechnologies would occur at national gatherings around the country where people would also nominate representatives to this national committee. The Committee would post these discussions and synthesize findings at a central location, publicbioethics.net, and systematically track the ongoing dialogue with the government. The responsibilities of the first Committee would include:
Science Progress proceeds from the propositions that scientific inquiry is among the finest expressions of human excellence, that it is a crucial source of human flourishing, a critical engine of economic growth, and must be dedicated to the common good. Scientific inquiry entails global responsibilities. It should lead to a more equitable, safer, and healthier future for all of humankind.