Abstract
It is the belief of this group that NBIC technologies present important challenges and opportunities that we must face; we have the utmost confidence that facing them will lead to a better future. The multidisciplinary spectrum of these technologies is so vast that special attention should be paid to the implications, benefits, and risks of human enhancement as a rising field of research and development. The ethical, social, economic, and political consequences of NBIC technologies will be present in everyday life. Special care should be taken to avoid excessive prudence or reckless adoption. Our decisions now will affect both the present and the future of humanity and life.
Keywords
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1 Chapter 17a 2008 National Citizens’ Technology Forum on Human Enhancement, Identity, and Biology
1.1 Arizona Panelists’ Final Report
Editor’s Note: These reports have been republished in approximately their original form, with only modest reformatting to preserve the visual continuity of this volume. The reports are the product of the participants in the National Citizen’s Technology Forum, and we wanted to preserve their authentic voice. No one specific view or conclusion can be attributed to any particular author.
Authors: Bohnke, Heather; Brandtfox, Trisha; Burns, James; Cartwright, Charles; Corso, Matt; Gulcelik, Guliz; Hull, Bart; Johnson, Darlene; Manriquez, Santiago; Romanick, Tamera; Ryan, Terry; Scott, Stuart; Thompson, Kirk; Zeise, Lynda
1.1.1 Introduction
It is the belief of this group that NBIC technologies present important challenges and opportunities that we must face; we have the utmost confidence that facing them will lead to a better future. The multidisciplinary spectrum of these technologies is so vast that special attention should be paid to the implications, benefits, and risks of human enhancement as a rising field of research and development. The ethical, social, economic, and political consequences of NBIC technologies will be present in everyday life. Special care should be taken to avoid excessive prudence or reckless adoption. Our decisions now will affect both the present and the future of humanity and life.
We are excited, as well as concerned, about improved quality of life for all people. Because we are at the beginnings of these converging technologies, it is important that we are proactive in our asking of questions. The answers will most likely lead to a bright future!
1.1.2 Socio-Economic
The socio-economic repercussions of the adoption of NBIC technologies are several. Some of them we can envision; many more we cannot. These repercussions can range from the aggravation of existing racial, social and economic divides, even to the creation of new ones. It carries the possibility of eliminating some current societal and economic problems to the creation of new ones. However, in presenting and adopting these new developments we should aim to maintain the ideals that allow the individual to become who she/he strives to be, and safeguard the values of liberty and free will, and the pursuit of happiness.
We believe that all people regardless of race, creed, color, or economic status should have equitable access to the benefits of these technologies. The information about these technologies must be presented to the public in terms that will allow understanding of the concepts, benefits, and risks, so as to lead to informed decisions.
We are concerned that under-represented and/or minority groups (e.g., Native Americans) will not have a say in the decision-making processes of these technologies, and that their voices of concern will be ignored.
Discrimination towards an individual, race, class, faith, etc., should be prevented regardless of the degree to which they have adopted NBIC technologies.
The future of NBIC technologies should rest with the needs of advancing humanity past the scourges of the human condition. These include poverty, disease, and manual labor. The direction should be bound by the concerns of the public.
Finally, citizens of the world want more information shared by the media, government, and industry to advance awareness.
1.1.3 Safety
We encourage the development of international safeguards and standards for all human enhancement technologies for both public and private sectors. We are concerned about who can be trusted, where reliable information can be found, and who is going to assure human and environmental safety now and in the future. We are also concerned that the “government” regulates itself and there is no oversight of that process. For example, atomic energy sites and old military bases are now “Superfund” sites because of the environmental cleanup costs – the government created a problem and is now responsible for toxic environmental cleanup.
There is a need for the creation of a regulatory body composed of experts from a variety of fields, e.g. ethicists, chemists, etc. Its responsibilities would be the oversight of NBIC safety and efficacy. Its accountability would lie within itself as a regulatory body, the government, and the scientific community. However, regulations from this body or the government should refrain from instilling fear or instituting regulations out of fear.
1.1.4 Human Identity
We believe in an overriding sense of both individuality and personal identity, and an environment that nurtures free will, in which each person has the right to use or refuse enhancement. It is important to safeguard the ideal that every individual is in fact a unique and sovereign entity in his or her own right. We should also strive to protect and respect the sanctity of the idea of an individual, unique, soul. Mortality is important to the human identity, yet the desire to improve the quality and length of life is also part of the human identity.
Regarding the debate of restoration vs. enhancement, we are divided in opinion. Some of us would like to see an adjusted bell curve implemented as a standard for normalcy. The adaptation of the bell curve would work not as a definitive statement of identity but as an establishment of when a person is either submitting to a restorative treatment or an enhancement procedure.
Others of us fear the use of an adjusted bell curve skewed in favor of enhancement as the new standard of normalcy. Implementation of this adjusted bell curve can lead to a new human identity that is fabricated by a societal obsession with enhancements.
Some of us are concerned that the personality, spirit, and identity of the individual will become altered and/or distorted.
1.1.5 Government
We, citizens of the world, are inherently responsible for the roles of our governments in participating with the global NBIC market. Active awareness of the decision-making process must be made transparent and accountable to the global community. We are concerned that the United States citizens are not involved in or truthfully informed of the appropriation of federal funds used for research and development of NBIC technologies.
1.1.6 Environmental
NBIC technologies should be used to find new environmental solutions to both new and old environmental problems, e.g., medical and biological waste. These externalities should not adversely affect the sanctity of life. In addition, we are concerned that we do not have adequate knowledge about, or means of disposal of, “waste” produced by NBIC technologies. For example, nano waste particles are so small they can easily contaminate the whole environment without anyone’s knowledge. Another example is recycled drinking water causing negative effects on the human system. We are concerned that these types of technologies will upset the natural order of the planet, people, plants, and animals, including life cycles and food chains.
1.1.7 Development Issues
Regarding development of NBIC technologies, we believe in the following:
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We should depart from a tendency and custom to legislate, enforce, and regulate out of fear. The evolving technologies should be allowed to grow and not be choked by regulatory concerns.
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Funding should remain both public and private to avoid monopolies.
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Human enhancement technologies need to be more understandable to non-scientists.
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We are concerned that the accessibility of this technology will be easily available to terrorists, black market labs, and/or other individuals with the intention to harm others.
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We are concerned that only a select few will benefit from NBIC technologies due to how accessible they will or will not be.
1.1.8 Health
We are on the cutting edge of an exciting and wonderful health revolution for the advancement of humankind. The goals of these technologies should be prevention, treatment, and cures over enhancement, and prioritizing humanitarian gain over special interest gain.
However, we still have some concerns. They are:
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prolonged exposure to NBIC in the body;
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risks of dehumanization as a result of NBIC;
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people living longer will further stress current planetary resources;
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a society filled with artificially enhanced individuals may become dependent on the medical profession;
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Immortality should not be a goal of NBIC health advancements lest it eliminate the meaning of living.
1.1.9 Regulatory Challenges
We are concerned about who makes the rules, the qualifications of the rule-makers, and their accountability to the public.
What makes NBIC technologies challenging from a regulatory standpoint:
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Permanence and dependability
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Enforcement and oversight
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Unforeseeable repercussions
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Limited understandings
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Widespread effects
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Generational effects
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Endangerment of organisms
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Maintaining safety and effectiveness without stifling progress and innovation
We are concerned about secret government infiltration and the invasion of privacy with these technologies. For example, (1) injecting nano tracking devices into humans to track their every move; (2) big brother watching and controlling the masses; (3) government directing where money goes against public interest.
1.1.10 Conclusions
The new and unique challenges presented by nanotechnology creates a need for new and unique safeguards and procedures to both protect and preserve a new and better quality of life for generations to come. We recommend that governments cooperate on a global scale. We would like to suggest the creation of a new regulatory and investigative bi-partisan committee that includes citizens, natural and social scientists, ethicists, philosophers of science, and governmental officials. It should be the responsibility of the government and individuals to be informed of the current state of affairs of NBIC technologies, hold industry accountable, and promote active decision-making and participation in the advancement of NBIC technologies.
2 Chapter 17b 2008 National Citizens’ Technology Forum on Human Enhancement, Identity, and Biology
2.1 California Panelists’ Final Report
Atwood, Christina; Bautista, Teresita; Chu, Angela; deJesus, Mary; fleming craig; Heath, Alan; Ho, Carmen; Lewis, Vanessa; Moses, Daniel; Prescott, Charles; Willis, Janine
Editor’s Note: These reports have been republished in approximately their original form, with only modest reformatting to preserve the visual continuity of this volume. The reports are the product of the participants in the National Citizen’s Technology Forum, and we wanted to preserve their authentic voice. No one specific view or conclusion can be attributed to any particular author.
This report was produced by a group of citizens from Northern California, as part of a nationwide public deliberation project. Participants were selected from a pool of volunteers, with the aim of constituting a panel that reflects the diversity of California’s population in terms of ethnicity, income, and gender. The group received and reviewed an extensive set of background materials concerning the convergence of nanotechnologies, biotechnologies, information technologies, and cognitive science (collectively NBIC), and their possible applications in the area of human enhancement. They gathered in person for an initial weekend of consultations, and participated in multiple online sessions together with the individuals from the other five sites nationwide. These online sessions included Q&A sessions with a number of experts in related disciplines, as well as an exchange of views among locations. The process culminated in a final weekend of meetings, resulting in the following consensus report. The opinions and words expressed here are those of the participants.
March 31, 2008
2.1.1 Introduction
The goal of this report is to present a protocol for the testing and development of human enhancement products that will ensure the physical, cultural, social and political safety of human beings and protect our global environment, while simultaneously encouraging the innovative, aggressive and steadfast development of these new technologies. The convergence of NBIC technologies presents a tremendous set of potential benefits and risks. We want to ensure equitable access to the benefits, and minimize the public’s exposure to the risks.
Thus, the federal government should assume a broad proactive approach towards approving the development and use of these technologies including thorough, unbiased testing and the strict disclosure of all information. This requires coordination and cooperation among multiple government agencies, with adequate funding and authority to carry out their missions, without detracting from their existing responsibilities. Additionally, collaboration between the public and private sectors is an important element of an overall governance strategy. This includes identifying funding mechanisms that allow private organizations to contribute to the public good.
Currently, NBIC technologies cut across multiple industries and areas of application, and are characterized by a great deal of uncertainty. We are concerned by the apparent lack of a comprehensive, cohesive set of policies concerning the following areas:
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Allocation of funding
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Enforcement of regulations
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Disclosure of potential risks and benefits
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Testing and approval of new products using converging technologies
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Public education
We recognize that overregulation could stifle productive innovation, especially at such an early stage of deployment. We encourage the development of beneficial applications, but believe that public safety, individual rights and privacy should be a higher priority than profitability. We also encourage the United States government to continue its efforts at international collaboration and exchange in these areas.
Finally, we endorse participatory processes such as this National Citizens Technology Forum, and urge that similar opportunities for public input be ongoing.
2.1.2 Specific Recommendations
Within each priority area, recommendations are numbered in accordance with the following categorization:
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The policy-making and priority-setting processes for NBIC
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Environmental Concerns
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Privacy
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Public Welfare and Safety
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Alternatives (to NBIC-based human enhancement) and Prevention
2.1.2.1 Allocation of funding
2.1.2.1.1 Policy Process
With public funds in short supply and competition between agencies for these monies, we need to establish a system to prioritize the allocation of funds.
Agencies and projects requesting public funding for nanotech should clearly demonstrate that the monies would be used first for treating, preventing or curing disease or other human suffering; and, second for human enhancement beyond “normal” capabilities. Military applications should be the third level of priority, unless shown to be necessary for national security.
We recommend that government introduce methods for increasing stakeholders’ ability to have a say in how funds for non-military research are allocated. By stakeholders, we refer to the public, NGOs, and others that represent the public interest. Some methods for achieving this may include congressional commissions that bring together scientists, consumer groups, and others without a stake in the outcome of funding decisions, citizen institutional review boards, and others. Academics in this field are discussing alternative methods that the government should consider.
Regarding access to information, while recognizing some information needs to be classified and that much information is already available, we recommend that greater efforts be made to make the details of products being produced with government funding as available as possible.
There should be funding dedicated specifically to monitoring, testing and ensuring the public and workplace safety and the environment. This includes funding for inspectors and adequate agency staffing to carry out these tasks effectively.
The government should not allow religious values to affect public or private funding for emerging human enhancement technologies.
2.1.2.1.2 Environmental Concerns
Incentives should be used to encourage companies to develop NBIC-based solutions to clean up pollution resulting from human enhancement activities.
2.1.2.1.3 Alternatives and Prevention
For every dollar of public money invested in NBIC technologies for disease remediation, a proportionate amount must be allocated towards research in, the promotion of, or increasing the accessibility of preventative medicine.
Public research funds should target disease prevention, particularly AIDS, hypertension, diabetes, heart disease, cancer, etc., along with repair and replacement of body parts.
We recommend that, for each family of enhancement applications, we assess the availability of lower-risk and/or more cost-effective alternatives to NBIC technologies before allocating significant funding.
2.1.2.2 Enforcement of Regulations
2.1.2.2.1 Policy Process
We recommend the formation of a new oversight body explicitly focused on NBIC technologies, comprised of representatives from existing government agencies, including EPA, FDA, Homeland Security, HHS, OSHA, etc., in order to implement the policy recommendations made in this report effectively. It is important that the individual members have the necessary expertise and time to dedicate to these issues.
The federal government should continue to seek international cooperation with regard to developing and implementing policies to manage the risks and benefits of NBIC technologies.
2.1.2.2.2 Environmental Concerns
Severe civil and criminal penalties should be levied against companies that develop or use NBIC technologies that damage the environment. It is important that these penalties are not simply seen as a routine cost of doing business, but are substantial enough to prevent such actions.
2.1.2.2.3 Privacy
Medical information must be kept private and confidential. If a medical procedure can or will jeopardize a patient’s privacy, the patient must be able to make an informed decision about whether or not to proceed. Existing regulations guaranteeing privacy should be extended as appropriate to cover new privacy risks arising from NBIC-based applications.
Health insurers should be prohibited from discriminating against individuals based on genetic testing or new methods for early disease detection, whether in group or individual policies. This includes both the denial of policies and coverage for specific therapies.
Employers should be prohibited from discriminating against individuals for employment and workplace opportunities based on NBIC-derived medical information or treatments.
Legislation is needed to guarantee that the military and other security-related organizations, including the CIA, NSA, FBI, Homeland Security, and federal, state and local law enforcement, cannot use these technologies to conduct surveillance on people residing in the U.S. without due process. Because NBIC-based technologies pose a serious risk of abuse of privacy, these rights must be protected by the Constitution. To this end, it is necessary to review whether they are adequately covered in the current Constitution.
2.1.2.2.4 Public welfare and safety
All military personnel must be given full disclosure of any risks to personal health and safety derived from the use of NBIC-based applications for military purposes and must be allowed to consent or not, without retribution or coercion. Furthermore, the military must be responsible for the effects of any implants or personal deployment of NBIC-based technologies and actively assist with re-integration into civilian life.
2.1.2.3 Disclosure
2.1.2.3.1 Public welfare and safety
All test results affecting public safety and welfare must be fully disclosed in a timely manner upon discovery. It is in the public’s interest to have all information concerning health and safety readily available so that an informed decision can be made by each individual as well as by society as a whole. Knowledge is power.
All consumer products containing nanomaterials or produced using nanotech must be clearly labeled as such.
All worksites where workers are handling or exposed to nanomaterials must clearly post notices of the potential human risks of these materials, as well as verbally inform workers of these risks.
2.1.2.4 Testing and Approval
2.1.2.4.1 Environmental Concerns
All NBIC-based technologies should go through vigorous testing regarding the effect of the specific nanomaterials on the environment.
When testing human enhancement products, we must keep in mind the integral relationship between the earth and humans. We are completely dependent on the earth and it is our responsibility to take every action to protect it. Recycling and waste strategies should be tested ahead of times. Private and public developers should pay for their own waste management and clean up. Those that do not comply with regulation should be penalized. We should ensure that no irreparable harm would come to the physical environment of our earth or surrounding atmosphere.
Non-biased, neutral experts should complete testing. Studies by industry or private business interests alone will not be considered sufficient evidence for the approval of new technologies. Follow-up testing must be conducted on a regular basis.
Producers of nanomaterials or nano-based consumer products need to be held responsible for the environmental impact of their products for their entire lifespan: from the extraction or production of raw materials to the conditions under which it is produced – including worker safety – to the proper disposal and/or recycling of the product itself and wastes/byproducts of production.
2.1.2.4.2 Public welfare and safety
Where feasible, testing should be done on artificial/virtual subjects before testing on humans and animals.
Before any human enhancement technology is approved for use on the market, thorough cost-benefit analyses should be conducted to compare these with any existing alternative therapies.
In regards to human testing, testing should only occur with willing participants. Testing should not target certain ethnic and prisoner communities. Testing should only occur after testers have actively provided testees with as much information as possible about the materials, procedures, side effects, potential harms, physiological/emotional changes, and long-term effects.
The communities surrounding test facilities should be made aware of the testing procedures, possibility of dangerous outcomes, waste management procedures, and all changes in the environment before testing. Neighborhoods and towns should have the authority to say whether they approve the testing. If the environment is damaged, the company should pay for clean up and compensate the community appropriately.
Under no circumstances is it ok to release dangerous, toxic, or untested particles/substances into the environments of communities and countries that do not have the privilege of financial or regulatory protection.
All neighborhoods and cities should be equally protected from adverse consequences of testing despite the economic advantages or disadvantages of the community.
2.1.2.5 Public Education
2.1.2.5.1 Public welfare and safety
The public must be educated particularly regarding the potential benefits and harms involved in employing NBIC-based technologies for human enhancement, such as misuse, contamination, etc. This can be accomplished via public service announcements, public school education, neighborhood workshops, press releases, talk shows, mass emails (e-blasts), white papers, FAQs, and others.
Patients seeking or eligible for NBIC-based treatments and human enhancement options should be informed by their physicians of alternatives. Complete information should be available and accessible to the public in both printed and electronic form.
The results of clinical trials of these technologies should be disseminated to workers/unions, consumers, educators, NGOs, and academics via the methods listed above.
3 Chapter 17c 2008 National Citizens’ Technology Forum on Human Enhancement, Identity, & Biology
3.1 Colorado Panelists’ Final Report
Eric Brown, Teri Burgess, Nichole Carter, Abraham Eng, Starlyn First, Brett Kuenne, An Light, Ricky Lott, Patrick Mingus, Rose Murray, Alex Ramirez, Eldrine Richardson, Ariel Thomas, Tara Van Bommel
Editor’s Note: These reports have been republished in approximately their original form, with only modest reformatting to preserve the visual continuity of this volume. The reports are the product of the participants in the National Citizen’s Technology Forum, and we wanted to preserve their authentic voice. No one specific view or conclusion can be attributed to any particular author.
Open Letter to Honorable Senators Wayne Allard and Ken Salazar and Repre-sentatives Degette, Lamborn, Musgrave, Perlmutter, Salazar, Tancredo, and Udall
3.1.1 Introduction
In March 2008, small groups of volunteer citizens gathered for two weekends to consider what guidelines might best steer the development of some very powerful, new technologies. Of specific concern were nanoscience, nanotechnology, and the ways these are merging with biotechnology, information technology, and cognitive science. The four together often are referred to as nano-bio-info-cogno (NBIC) science and technology, which may provide powerful ways to enhance human behavior and experience.
The 14 of us were one of six groups, and we met at the Colorado School of Mines in Golden, Colorado. Along with two in-person weekends, we got together via computer conference for nine 2-h sessions with members of other groups and NBIC experts. (More information about this project is available at the National Citizens Technology Forum web site, http://cns.asu.edu/nctf).
The activity as a whole was sponsored by the National Science Foundation (NSF) as part of its effort to ensure that NBIC development takes into account a broad spectrum of perspectives from all citizens. The idea behind the forum is that it is important for citizens to consider how NBIC technologies should be developed before they are actually implemented. The hope is that concerned citizens will be able to provide decision makers in government, business, and society with the informed, deliberative opinions of ordinary people who have taken the time to study these issues with some care.
3.1.2 Enhancement
Because of this process, we have formulated some recommendations for developing, educating the public about, and regulating nanotechnology (nanotech). Our comments are directed primarily toward the implementation of nanotech for human enhancement. Enhancement is defined as the improvement of human and cognitive abilities. These abilities are said to expand the knowledge of how the human brain works, and are leading researchers to explore ways to modify its processes.
Although some may argue cognitive and human enhancement is comparable to earlier inventions such as modern electricity and computers, in fact nanotech is vastly different in that the broad scale of biological, cognitive, and informational applications is unlike anything seen before. Our recommendation is that nanotech be utilized for remediation to serve the goal of helping humans gain access to equality across the board as regards quality of life. Therefore, we suggest prioritization of funding should be given for issues of remediation.
Ideally, this type of technology should be available to those who need it the most no matter their income level. We strongly recommend that legislative action ensure that private insurers cover these needs and, failing that, government will step in to subsidize costs. Everyone, regardless of socioeconomic or cultural status, deserves equal access.
3.1.3 Education
We discovered that nanotech is a broad field encompassing a diverse array of scientific and technological developments, yet the public remains mostly unaware of these developments and their far-reaching implications. We therefore felt compelled to make sure the general public becomes educated on the nature of these technologies, from a thorough, accurate, and easily accessible source.
One reason for such strong feelings of unease stems from the possible effects of nanotech on humanity, society, and the ecosystem. The developments in the field of nanotech are revolutionary. For example, currently in clinical trials are Brain Machine Interface (BMI) chips, which when implanted in the deep tissue of the brain allow a person to communicate with a computer via their brain signals.
This is only the beginning for nanotech, since it is in its infancy. Promising developments range from bionic eyes to nanoparticles that detect chemical and hormonal changes early, thus eliminating disease before symptoms emerge. For many, the possibility of the elimination of disease and the ability to attain a greater quality of life is a bright prospect, yet there are many possible adverse outcomes.
The dark side of nanotech was a ubiquitous concern in our group discussions. For many the maintenance of privacy and personal identity are problematic. Nanotech could make possible nanochips that allow us to communicate directly with computers or even link to the Internet. As citizens, we need to consider who should have access to our information, and for what uses.
To ensure the effective dissemination of information, with the goal of creating greater public awareness we propose the following policy recommendations:
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1.
Continued citizens’ forums, funded annually by the National Science Foundation, to re-evaluate nanotech issues and update policy recommendations based on changes in emerging research and public opinion.
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2.
Create a federally managed online clearinghouse that consolidates all current resources and information on nanotech. These resources should be advertised in a variety of popular media.
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3.
The development of nanotech science exhibits explaining the technology, its relevance, its implications for the near and distant future, and nanotech products such as sunscreen, beauty products, food products.
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4.
Grants from the federal government to fund curriculum in public schools.
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5.
Convene an international nanotech summit involving government agencies, non-governmental agencies, industry leaders, and citizens. The goal of the summit is to engage in international dialogue on the development of nanotech, promote the exchange of ideas, and ultimately draft an international treaty of nanotech, which would establish appropriate regulations. The treaty should, at the least, restrict the use of nanotechnology in ways which might contaminate the human race or the environment, as well as in certain military applications in addition to avoiding empowering extremist groups by giving them access to nanotech, prohibit the exploitation of under privileged groups in relation to testing and implementation of the technology, and promote the open exchange of ideas among nations.
3.1.4 Regulation
It is our position that these new advancing technologies will reach into areas that are not overseen by current regulatory bodies, namely the FDA and the EPA. Therefore, it is our desire to see a new regulatory body established to both extend regulatory oversight over human enhancing technologies, and to alleviate the burden on current regulatory agencies.
This new Human Enhancement Regulatory Agency (HERA) would not only be responsible for the extensive testing of these types of products and enhancements, but also would be the United States’ point of contact with the rest of the world.
It is imperative that the global community reaches consensus on how these technologies will be governed. Because these human-enhancing technologies are inseparable from their hosts who are free to travel across international borders, it would be in the best interests of all to find common ground with respect to regulation and implementation of said technologies.
In addition to the creation of a new regulatory agency and a commitment to the international community, we would like to voice our concern about the potential use of these technologies for coercive behavioral modification, such as the use of implants to control prisoners.
It is also foreseeable that the application of non-reversible enhancing technologies in a military context would be the first step toward an arms race that would have the inevitable result of the complete dehumanization of the future soldier. Such forced implementation of these technologies should never be allowed in a free society, and therefore should be banned.
Nanotech is going to revolutionize the world. We believe that an informed public can alter the course of this technology, so as to avoid the possible disastrous outcomes of a technology which runs rampant without proper regulation, and to ensure that nanotech is used for the greatest good for the greatest number.
Finally, we completely acknowledge and support the ability of our representatives to be flexible in accommodating these technologies as they become available. However, no matter how far this technology advances it is never acceptable for our government to use such advances to usurp civil liberties and freedoms that are guaranteed to U.S. citizens under our Constitution.
4 Chapter 17d 2008 National Citizens’ Technology Forum on Human Enhancement, Identity, & Biology
4.1 Georgia Panelists’ Final Report
Georgia Panelists: Adair, Allison; Alistairre, Rexxor; Bagheri, Johan; Curtis, Jennifer Leah; FitzHugh Foster; Goedeker, Michelle; Hairston, Timothy; Iglesias, Diana; Johnson Katherine; Johnson, Ashley; Naranjo, Juan; Ravi, Kokila; Reed, Jonathan; Shepherd, Carolyn; Singletary, Richard
Editor’s Note: These reports have been republished in approximately their original form, with only modest reformatting to preserve the visual continuity of this volume. The reports are the product of the participants in the National Citizen’s Technology Forum, and we wanted to preserve their authentic voice. No one specific view or conclusion can be attributed to any particular author.
The 2008 Atlanta National Citizens’ Technology Forum included 13 participants drawn from a diverse range of ages, educational levels, ethnic backgrounds, and professions. The following report reflects the deliberations and consensus of our group.
We are enthusiastic about using nanotechnologies for human repair and regeneration. For example, grafts made from our own skin, regenerated limbs, sensors to release insulin automatically for diabetics, precisely targeted treatments for cancer, chips that can restore brain functions for people with Alzheimer’s and Parkinson’s diseases – all these things are exciting developments. We hope to see them move forward.
We have more mixed views, however, on the possibility of using nanotechnology for human enhancement. We agree that individuals should be able to choose enhancements if they want them, but we also picture that some limits will be necessary. For example, we approve of the use of nanotechnologies in the military where they are used to prevent loss of life, particularly through robotics, but we are worried about effects on the human body of applications like a biotechnologically enhanced soldier who can stay up for days.
We have several major concerns about the applications of nanotechnology in biological sciences. We are concerned (1) that there is currently no agency capable of regulating the technologies, leading to a situation in which development may be driven primarily by greed and not by improvements for humanity; (2) that some of technologies could be dangerous if they fell into the wrong hands; (3) that the technologies could have long term effects on human health and the environment; (4) that the high cost of the technologies will lead to unequal access, which will lead to greater gaps between the haves and the have-nots; and (5) that the public will not receive complete information on the benefits and risks.
4.1.1 Top Ten Questions
A number of major questions need to be answered as this set of technologies moves forward.
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1.
How will these emerging technologies benefit humanity as a whole – who decides who gets what, for what purpose, and why?
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How do we ensure that nanotechnologies do not fall into the hands of those who want to control or cause harm?
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3.
Where is the funding coming from and does the funding, give certain rights to the technologies for the funders?
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4.
How do we ensure that there is a careful analysis of the long-term side effects (i.e. on people, plants, animals and the environment) of these emerging technologies?
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How will the maintenance of these technologies be developed and deployed?
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6.
Given the critical nature of regulating these emerging technologies, how do we ensure that a separate governing body with adequate resources and relevant competencies will be established and deployed to implement appropriate policies, guidelines, rules, and laws?
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7.
How do you control the applications of nanotechnologies?
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8.
What are the marketing strategies for these emerging technologies?
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9.
Will there be an advisory panel to decide ethical questions and if so who?
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10.
How can we ensure that the public will receive balanced information on the benefits and risks?
4.1.2 Recommendations
4.1.2.1 Regulations
Given the critical nature of emerging nanotechnologies, and given the fact that existing agencies are not capable of regulating these technologies, this committee recommends that a new regulatory agency be established on a national basis with an independent civilian board (see next section). This agency should be adequately staffed.
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The agency will have a director who is or has a scientific/technical background with a Ph.D. or M.D. education and who has practiced or researched in a field of Nanotechnology.
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The agency will be staffed with individuals who have appropriate backgrounds in the natural and social sciences, technology, philosophy, law and the humanities.
The agency must be charged with establishing rules, regulations, protocols, and laws for:
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Research & Development
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Commercialization and maintenance
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Privacy
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Sectors including but not limited to medical/health, general public, industrial, and national security
The agency should develop and implement standards for legal ramifications including but not limited to:
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Ownership
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Liability
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Limitations
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Consequences
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Enforcement
The agency should work to develop international relationships that have a focus on synergistic efforts for the betterment of humanity, e.g., the International Space Station. It should also develop a set of guidelines to help insure an open line of communication between the agency and military applications. This new organization should collaborate with existing agencies to develop and implement security policies and laws that ensure that the safety and welfare of all humanity are protected and safeguarded so that these technologies are not used in a detrimental manner. Although funding will provide certain intellectual property rights to NBIC technologies sponsors, these rights should be subject to national security concerns.
4.1.2.2 Policing
We recommend that an independent Civilian Board monitor the regulatory agency just described. The Board would consist of well-informed lay people with various backgrounds who will serve for limited terms. The Board would analyze materials on issues such as privacy and safeguards and make recommendations on the use and development of NBIC technologies.
4.1.2.3 Long Term Effects
As we explore these new technologies, we recommend that those working in the field be cognizant of the long-term effects that these technologies pose for quality of life. Since we do not know these effects, we recommend that, after the devices have been approved for use, there be a study that tracks a real world sample of users. The study should carefully follow medical progress or regression, and provide data on broader changes in the lives of the people involved. This study also would carry over into the fields of agriculture and animal life. This data is very important and should be accurate and unbiased in order to show the various improvements that need to be made.
To avoid over-reliance on these technologies, we also recommend that governing bodies and the healthcare industry get more involved in the general healthcare and well being of the public stressing the overall benefits of good health, rather than using these new technologies as a solve-all for preventable health issues.
We recommend that the development of NBIC technologies promote diversity and preserve free choice. We want to avoid homogeneity and over-reliance on these technologies and the creation of a master race. We do not want to live in a world in which everyone is the same or where people have become machine-like, devoid of emotions.
4.1.2.4 Inequality
Inequality has always existed. There has never been a modern society where everyone is equal. As nanotechnologies develop, society should try to keep in mind that we do not want to increase the gap between the haves and have-nots. We want to decrease the gap.
If cost alone determines who gets or does not get reparative or enhancement technologies, then it seems obvious that there will be greater inequality in society. Thus, as society tries to compensate for the inequality that may be produced by NBIC technologies, a new healthcare system will be needed. To focus NBIC technologies on lowering inequalities, reparative applications should lead in funding rather than research on enhancements.
4.1.2.5 Public Information
We recommend that the regulatory agency described earlier maintain an NBIC website collaboratively with international partners and in multiple languages. Transparency and open access will help to maintain the accuracy of information on the site. The global website at a minimum will provide the following information:
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All companies involved in manufacture and maintenance of NBIC technologies including the processes they use.
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All NBIC products and components in development and commercially available
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Updated information on risks, side effects, and benefits, with the percentage of people who have experienced each of these risks, side effects, and benefits.
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An Ask the Experts feature where experts can respond to NBIC questions within a timely manner
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All pertinent information for a particular product concerning providers and procedures for installation, maintenance, and reversibility.
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Insurance coverage – percentage exceptions, inclusions, and other financial assistance information
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Percentage of successful installations per doctor per product and public disclosure of non-complying individuals and corporations
Private companies can all link to the web page, and the web site could be expanded to cover all nanotechnologies. The web site should be widely promoted. The information should be available in printed form if requested and available in public facilities such as libraries, hospitals, and doctors’ offices.
We are particularly concerned about NBIC advertising focusing more on benefits and not enough on risks. Therefore, advertising of NBIC technologies should be subject to full disclosure of known risks.
4.1.3 Conclusion
We understand that investment in NBIC technologies is critical to encourage innovation. We support public funding for research in this area, including opportunities for individuals to donate.
We strongly encourage that the responsible authorities, national and international, consider and implement these recommendations.
5 Chapter 17e 2008 National Citizens’ Technology Forum on Human Enhancement, Identity, and Biology
5.1 New Hampshire Panelists’ Final Report
New Hampshire Panelists: Cook, Frank; DeGrandpre, Angel; Hahn, Emily; Jones, Catherine; Kavanagh, John; Lapriore, Jane; Leigh, Katherine; Lemieux, Tammy; Murphy, Emily; Sutherland, Marc; Turni, Jennifer; Ward, Daniel
Editor’s Note: These reports have been republished in approximately their original form, with only modest reformatting to preserve the visual continuity of this volume. The reports are the product of the participants in the National Citizen’s Technology Forum, and we wanted to preserve their authentic voice. No one specific view or conclusion can be attributed to any particular author.
FINDING 1: The distinction between remediation and enhancement is too subjective to be used as the basis for public policy decisions.
RECOMMENDATIONS:
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1.
Alternative bases for public policy decisions should be based on a set of ground rules or prime directive including:
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Most good for the most people
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Least potential harm (The Prime Directive, again)
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Favor environmental good over personal good
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Favor benefits to groups of people over individuals
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Favor patient autonomy
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Favor health over military and cosmetic applications
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First do no harm
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FINDNG 2: Proprietary information precludes transparent knowledge to enable in depth discussion for independent evaluation before the technology reaches the market.
RECOMMENDATIONS:
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1.
There should be incentives for scientists to share information or collaborate on projects. Researchers and inventors should be urged to patent their discoveries promptly so that not only are they able to profit from their work but colleagues and competitors may openly evaluate those discoveries and build upon them.
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2.
Perhaps an intermediate waiting period in addition to existing requirements should be instated before a given technology is released to the public, to allow an independent evaluation regarding possible positive and negative implications to society.
FINDING 3: Existing regulatory agencies and statutes are ill equipped to review and regulate NBIC technologies emerging into the marketplace.
RECOMMENDATIONS:
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1.
A registry should be created under an appropriate agency in which corporations, universities and government entities (including the military) outline in broadest terms their ongoing NBIC research projects.
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2.
FDA should restructure to encompass not only its current responsibilities but will also oversee NBIC development and marketing. This will obviously require reorganization and an expanded workforce that will need to become educated in this new field.
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3.
Mandatory periodic professional development for law-makers to stay abreast of current NBIC-related technologies and how this relates to current statutes and any future statutes that might need to be proposed.
FINDING 4: Market place incentives will drive development of NBIC to occur outside of the existing US regulatory framework.
RECOMMENDATIONS:
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1.
Private enterprise will lead the development of new NBIC technologies, though international support for a defined set of guidelines must be developed to ensure social responsibility, thus decreasing the risk of unintended consequences. Appropriate structures must be in place to represent the public interest; these might include strong laws and treaties, but in any case, they should require accountability for companies producing products and people using them.
FINDING 5: Potential negative impacts of NBIC on society including biological evolution and use of public investments need to be considered in light of ethical considerations rather than solely commercial (cost-benefit).
RECOMMENDATIONS:
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1.
An emphasis should be placed on teaching ethics and personal responsibility at all levels of education; particularly including business and scientific education.
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2.
People with ethical training and backgrounds must be well represented on all boards and committees that have grant funding and regulatory powers.
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3.
There should be a diverse panel including scientists, ethicists, spiritual leaders, philosophers, and not including commercial interests, that will review and evaluate what NBIC technologies are being developed. The purpose of this panel would be to educate the public and recommend policy.
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4.
That there be firm legal ground for individuals and groups to seek redress for ethical breaches (rather than, or in addition to material damages) as a means to encourage accountability among the proponents of NBIC and provide broad control on the development and deployment of these technologies.
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5.
In addition to groups being held legally accountable, we propose recognition for ethically responsible practices such as minimizing environmental waste, safe work conditions, etc. Types of recognition may be access to grants, tax breaks, public acknowledgment (e.g. “Energy Star” version for ethics.)
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6.
The role of the medical doctor in implementation of NBIC technologies with human subjects/patients is of such import, that restatement of the relevant nondiscrimination provision of the Hippocratic Medical Oath produced by the World Medical Association in 1948, following the Nuremberg Nazi Drs. Trials, is imperative: “I will not permit consideration of race, religion, nationality, party politics or social standing to intervene between my duty and my patient.”
FINDING 6: There appears to be no mechanism in place to ensure equitable access to potential beneficial NBIC products and therapies.
RECOMMENDATIONS:
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1.
Access to emerging technologies must be guaranteed to those who need them most, therefore those with the power to regulate new NBIC technologies coming to market, must develop a framework to define the basis of need. This basis of need should be defined concerning the potential positive impact the therapy will have on the quality of life for that person, and not on desire for enhancement or financial resources available.
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2.
We believe that the focus should be on fixing the current health care system and making it affordable to the public.
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3.
Funding and regulatory decisions should favor applications of NBIC that encourage products that are widely distributable and easily affordable. NBIC, as a potential “building block” of our health system, like other medical products, vaccines, and technologies, is essential to a well functioning health system that ensures equitable access to essential medical products, vaccines and technologies of assured quality, safety, efficacy and cost-effectiveness, and that there uses be scientifically sound and cost-effective. (Recommendation substance derived “D. The Building Blocks of a Health System”) from United Nations Human Rights Council (UNHRC) Special Rapporteur Paul Hunt’s report to the UNHRC on “the right of everyone to the enjoyment of the highest attainable standard of physical and mental health” January 31, 2008
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4.
To facilitate lower costs and greater accessibility of these NBIC technologies naturally through corporate competition, the patent structure and lifespan should be modified. Patent laws should not allow rights to fundamental NBIC technologies to be maintained for excessive lengths of time.
FINDING 7 : Investment of limited public funds in NBIC diverts those resources from more pressing social (e.g., health related) needs.
RECOMMENDATIONS:
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1.
Formation of NBIC Council consisting of taxpayers from each state as well as government officials whose responsibility it is to review the national investment in specific NBIC technologies in relation to government spending on other programs such as public health needs, etc, and recommend budget allocations. This council will also generate a publication available to citizens, which will be followed by public hearings where ordinary citizens can give their input to the NBIC Council.
FINDING 8 : Given claims of potential power of NBIC technologies there is insufficient discussion of worst-case scenarios including unintended consequences and abuse and misuse
RECOMMENDATIONS:
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1.
The nation’s scientific community and policy think tanks, both public and private, should develop scenarios, possible responses, and theoretical outcomes. These scenarios and findings must be made available to the public. Potential risks must be evaluated independently from profit motives.
6 Chapter 17f 2008 National Citizens’ Technology Forum on Human Enhancement, Identity, and Biology
6.1 Wisconsin Panelists’ Final Report
Wisconsin Panelists: Daña Alder, Theresa Behnen, John Bushong, Nathan Comp, Andrea Connell, Madhavi Dodda, John Endres, Abbey Johnson, Leslie Kurabelis, Virginia Pickerell, Joseph Powell, Don Schantz, Marissa Steen, Magda Valdes
Editor’s Note: These reports have been republished in approximately their original form, with only modest reformatting to preserve the visual continuity of this volume. The reports are the product of the participants in the National Citizen’s Technology Forum, and we wanted to preserve their authentic voice. No one specific view or conclusion can be attributed to any particular author.
6.1.1 Introduction
In March 2008, 14 residents of the Madison metropolitan area participated in the “National Citizens’ Technology Forum” (NCTF), a project funded by the National Science Foundation through the Center on Nanotechnology and Society at Arizona State University. Teams of researchers from six universities, including the University of Wisconsin-Madison, organized parallel panels of approximately 15 individuals. Each group was charged with the task of developing policy recommendations on the topic of technologies of human enhancement, addressing scientific and technical developments in nanotechnology, biotechnology, information technology, and cognitive science (NBIC technologies). Participants undertook a guided process of learning and deliberating in order to create a set of recommendations arrived upon by consensus. Participants were chosen to reflect the diversity of each region and applicants were screened for conflicts of interest and prior affiliation with organizations that had taken a political position on nanotechnology.
6.1.2 The Process
Participants began by reading a 60-page packet of background materials compiled by the NCTF coordinating researchers at North Carolina State University. The packet, “Human Enhancement, Identity, and Biology,” represented an attempt to assemble the most accurate, current, and non-partisan information available and was reviewed by a number of specialists to ensure its accuracy, balance, and accessibility to non-experts. On March 1 and 2, the Madison participants met together with a team of researchers from the University of Wisconsin-Madison to discuss the background materials and begin to explore the various social, political, technical, economic, environmental, and ethical aspects of human enhancement NBIC technologies. The second phase of deliberation occurred online: Madison participants joined participants from the five other sites across the USA in a series of nine virtual, web-based meetings to develop and pose questions to scientific experts. In the third phase, the Madison group met in person on March 29 and 30 to evaluate what they had learned and deliberate over possible policy recommendations.
6.1.3 The Purpose
Challenges such as genetically modified food, climate change, and stem cell research suggest the value of engaging citizens in technological governance. Often, however, citizens are invited to learn and deliberate only after a technology has been introduced. In contrast, the NCTF aims to engage laypersons before significant technologies of human enhancement mature and reach the stage of deployment and commercialization. Researchers and participants alike see the value in incorporating the concerns of laypersons in the governance, research, and development of technologies with great potential to affect human society and the environment. The consensus format of the NCTF, in particular, represents one strategy to take advantage of the intersection of lay and expert knowledge – engaging “ordinary” citizens who have invested time and energy to learn from experts and deliberate over possible guidelines for technology.
6.1.4 Policy Recommendations
The following recommendations represent the consensus of the 14 members of the Madison panel of the NCTF. For the purposes of this document, consensus indicates not unanimous support, but the wisdom of the group without major objection.
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1.
FUNDING ACCOUNTABILITY
Require state and federal agencies that fund or provide partial funding for human enhancement technologies research at either private or public institutions to make the following information available at a centralized, online location:
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Availability of funding/criteria
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Agency/researchers being funded
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Goals of the research
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Regular status reports
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Final reports
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Community notification/outreach
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2.
PRIVACY CONCERNS
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Recent erosions of privacy might combine with unprecedented possibilities of nanotech to further endanger privacy rights. We propose that appropriate precautions be taken to safeguard privacy, favoring individual rights.
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We propose that diagnostic tests or procedures, especially those that could result in denial of health coverage, be kept confidential and private.
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Legal privacy concerns will be more complex as new NBIC technologies emerge. For example, body modifications and modifications of one’s children challenge current distinctions between individual rights and the public interest.
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3.
ETHICAL CONSIDERATIONS
We believe that ethical considerations are integral to the scientific process. To that end, scientists in both the public and private sectors of nanotechnology development should strive to benefit the greatest common good and address basic societal issues. In order to achieve this goal, we recommend the following:
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Ethical concerns should be incorporated in all science curricula.
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All regulatory bodies involved with nanotechnology should include at least one ethicist.
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Policies should be developed to address the possibility that an increase in expensive technology will result in an increase in economic and social division, both nationally and internationally.
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4.
SAFETY/TESTING CONCERNS
“Prevention is better than cure” holds true for NBIC human enhancement developments. We suggest that it will be more cost efficient to enforce comprehensive and rigorous testing and safety standards before the products are on the market, rather than addressing the various health and legal problems that might arise without extensive and thorough testing of the products.
In order to ensure that the risk/benefit ratio is properly assessed prior to using such products, we recommend that FDA provide effective communication of possible/expected side effects and long term effects of using any nanotech products, not just medicine and food-related, in easy language that is understood by the common people.
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5.
HEALTH INSURANCE
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Health insurance policies in general should cover any nanotech enhancements and remediation technologies that could be deemed as medically necessary by current medical and insurance industry standards.
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Health insurance providers should be diligent in keeping up with current NBIC procedures and technologies and updating policies with specific inclusions and exclusions to coverage.
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Health insurance providers should include clear statements of their coverage of NBIC technologies in their policies.
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6.
FDA
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Empower the FDA to accomplish its mission with adequate funding in order to review its mission and to operate successfully to meet the mission.
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The FDA’s mission needs to include nanotechnology.
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Ensure enforcement of FDA guidelines for all individuals involved in the development and manufacture of NBIC technologies.
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Ensure that guidelines keep pace with new developments and their social and ethical impacts.
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Make nano-toxicity research a higher funding priority.
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Establish a series of regulatory goals and deadlines for the nanotech industry.
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7.
EDUCATION
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Include nanotechnology in basic high school science curricula.
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Increase funding for science programs for improving teacher training and recruitment as part of a broad effort to improve K-12 education.
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Hays, S.A., Robert, J.S., Miller, C.A., Bennett, I. (2013). Panelists’ Reports by State: Arizona, California, Colorado, Georgia, New Hampshire, and Wisconsin (a–f). In: Hays, S., Robert, J., Miller, C., Bennett, I. (eds) Nanotechnology, the Brain, and the Future. Yearbook of Nanotechnology in Society, vol 3. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-1787-9_17
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