Public Participation and Responsible Uses of Human Biotechnologies
As President Barack Obama recently signed the order lifting restrictions on stem cell research and took a much-needed stance in defense of the integrity and importance of science, we must also develop systems for ensuring the active participation of the American public in all national discussions about the responsible uses of human biotechnologies.
For all their groundbreaking benefits, some biotechnologies come with life-changing risks.Genetic science and technologies can, and in some cases already do, reshape how people understand themselves, how they define family, and who they consider a part of their community. Without curtailing scientific freedom, we must make a distinction between scientific discovery and ongoing uses of any technology. To ensure that these biotechnologies do not lead to division and dystopia, we must use them in responsible ways, so that our social understandings of family, community and selves affirm a shared humanity and a democratic future.
But public inclusion in these critical debates can be achieved only through broad-based community participation and ongoing dialogue between scientists, the public and government.
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:
- Host the first series of regional public gatherings for the widest array of public and community interest groups.
- Collect information about the diversity of perspectives and groups interested in participating and ways to involve them in ongoing discussions.
- Post all the issues developed by interested groups to publicbioethics.net and encourage ongoing engagement both between groups and with scientists and the government on responsiblebiotechnologies.gov.
- Track and synthesize public perspectives and issue periodic reports evaluating the integration of public perspectives into government policies and guidelines.
- Develop an application and selection process to ensure that subsequent committee members represent the diversity of public perspectives and issues.
By implementing these two processes—a Public Consultation on Responsible Guidelines for Human Biotechnologies and a National Community Representative Committee—this administration can make real its commitment to responsibility, participation, and transparency in the ways these new technologies will be used. They will ensure that these technologies will never be abused or misused, that multiple stakeholders are invited to participate in meaningful ways at every stage, and that the government is engaged in an open and honest dialogue with Americans regarding critical understandings of humanity, responsibility, and conscience. These processes can ensure that the noble goals—the search for knowledge and the defense of our shared humanity—can inform and reinforce each other, embodying American democratic ideals in scientific practice.
Dr. Sujatha Jesudason is the executive director of Generations Ahead, which works with organizations around the country to encourage participation in discussions about responsible uses of genetic technologies. We bring diverse communities together to expand the public debate and promote policies on genetic technologies that protect human rights and affirm our shared humanity. By building the capacity of more than 100 civil society organizations to develop more informed positions, we have increased the number of perspectives and voices involved in national discussions and policy making about human genetic technologies.
For information, please contact Dr. Sujatha Jesudason, at 510-326-0041 or firstname.lastname@example.org.
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