Allies and Enemies in the Fight for Mental Health Reform

 By Nathan Ahlgrim



The Need for Allies

Image courtesy of Wikimedia Commons.

Mental healthcare in the United States is in need of serious reform. Mental healthcare is less accessible than other services, and efforts to repeal the Affordable Care Act could put adequate care out of reach for millions more Americans.

Opposition to mental healthcare reform comes from all sides, with the popular talking points demanding law and order, fiscal responsibility, and moral accountability. Still, the consequences of un- or under-treated people interacting with un- or under-trained authorities are hard to ignore, most strikingly in the criminal justice system. Americans with mental illnesses are sixteen times more likely to be shot by police, and more than half of all inmates in America suffer from mental health problems. Mental health reform, then, stands to benefit the healthcare system, criminal justice, and family structure itself.

Given the opposition, legislative policy victories will require a rallying of the troops and solidarity among all conceivable allies. Though it is tempting to welcome any and all help, even the purest of idealists can be hamstrung by allying with activists who actively fight the mainstream. The decisions of who to include and exclude as allies can determine a movement’s success as much as the message itself.

Patch Adams

Image courtesy of Wikimedia Commons.

I recently returned from a week of volunteering at the Gesundheit! Institute (yes, the exclamation point is a part of the name). The brainchild of Dr. Patch Adams (in collaboration with a group of classmates and now ex-wife Linda Edquist), the institute was established on the dream of providing free, personal, and caring healthcare as well as a healthcare system that seeks to improve quality of life instead of simply delaying death. Oh, and it is a clinic populated by clowns.

Clowns were and are intimately woven into the fabric of Gesundheit. The Institute was popularized by the sappy and critically derided (but personally cherished) 1998 biopic Patch Adams starring Robin Williams as the clown doctor himself. The movie chronicles Patch’s revolutionary approach to medicine and the opposition he faced to the unorthodoxy of putting the words “clown” and “doctor” in the same job description. In real life, the team operated a free clinic for a renegade twelve-year period, during which they saw more than 15,000 patients. They closed in 1984 to spread the mission, find funding, and build a permanent hospital in West Virginia. As I saw first-hand, the 321-acre land in rural West Virginia is a tangible counterpoint to the American healthcare system. Thirty-three years later, the work is still in progress.

Patch believes in holistic care. Critics often simplify his care philosophy to “laughter cures all.” As jarring as a clown doctor can be, he is far from the only one who takes advantage of laughter therapy. Many nursing homes incorporate deliberate laughter and humor into their care [1, 2], and laughter has been reported to increase psychological resilience and even some physiological measures like pain tolerance [3] and immune activity [4]. Although, not surprisingly, a major weakness in the research linking humor and health is its anecdotal and subjective nature [5, 6]. Patch does believe in laughter as medicine, in conjunction with traditional Western medicine and complementary treatment strategies. In modern parlance, Patch’s philosophy might best be described as promoting wellness above and beyond physical health.

The "Dacha": the main building on the property.

The Gesundheit! Institute grew out of his dissatisfaction with the ineffective and impersonal treatment he received as a patient. And yet, his beliefs about mental health, their causes, and the responsibilities of those struggling with mental health problems can be a hard pill for advocates and allies to swallow.

Conceptualizations of mental illness

Crucially to the matter at hand, Patch dismisses the physiological causes of mental health disorders like depression and attention deficit disorder, going so far as to label those with such illnesses as being morally responsible for their condition (see reactions to speeches here and here). He did release a touching statement following Robin Williams’ tragic suicide, but his primary reaction (relayed by his colleagues) was that “[Robin Williams] did not have any friends.” I cannot defend this position as a neuroscientist and an advocate for those suffering from mental health conditions.

The lens of depression blurs all existing friends until they cease to matter, an effect I have experienced first-hand. Biological mechanisms influence many diseases, and medications can provide relief for many patients. At the same time, I know that over-medicating patients is a real concern, even if a universal consensus seems out of reach. Herein lies the dilemma. Patch offers compassionate care, but disregards the biological basis of mental illnesses. In his mind, lifestyle choices are the principal cause, fault, and blame. His statements are jarring in the current medical context, but the pendulum of mainstream medical opinion has swung erratically between personal responsibility and biomedical etiology of mental illness over the past few centuries. Where the pendulum stops is more than a semantic matter. Everything from treatment outcomes to community acceptance is dependent on how we describe mental health and the people who suffer from related disorders

Stigma

Image courtesy of Pixabay user geralt.

Stigma, as described by Dr. Patrick Corrigan, grows out of the progression from stereotypes (attitudes about groups of people) to prejudice (when you agree with those stereotypes) to discrimination (behavior influenced by prejudice). Potential patients hide from the looming stigma, which can decrease treatment-seeking behavior and kick off a self-perpetuating cycle of isolation [7]. Just how members of the LGBTQ community had to overcome stigma and isolation at the beginning of the gay rights movement, Dr. Corrigan urges people with mental illnesses to “come out” about their status. The only way to decrease stigma is to show that everyone knows someone who is a part of this community.

Should we treat a person as sick or as deficient? I was tempted to champion the biomedical model in the face of Patch’s dismissal. I personally find Patch’s opinion, that mental illnesses like depression are a controllable choice, disrespectful to those suffering from mental illness. It minimizes the biological (and uncontrollable) hurdles that they must overcome. In doing so, his vision of universal healthcare would paradoxically remove necessary treatments from these patients.

Although the National Institute of Mental Health promotes the narrative of biological mechanisms in an effort to mitigate stigma felt by patients (from themselves and others), the net effect of this narrative depends on what sort of stigma is measured. Attributing mental illness to biological mechanisms correlates with decreased social distancing of the person with the illness (i.e. less shunning and shaming), but it also increases how dangerous people with schizophrenia or depression appear [8]. Not only that, but emphasizing the biological cause of a disorder above all other factors is an easy way to breed a perception of helplessness and a lack of control [9]. “Othering” is easy when mental illnesses are confined to a categorically different type of person [9]; however, negating the biology blames the person, causing any mental problem to spring from character flaws and weakness [10]. That is why an integrated biopsychosocial model is indispensable: illnesses are frequently triggered by the environment – be it relationship stress, emotional trauma, or other psychological insult – but the trigger will not spark an illness in the absence of a biological vulnerability (as in the diathesis-stress model [11]). As such, many psychiatrists and neuroscientists now promote an interdisciplinary and holistic view of mental health.

By departing from a holistic approach, figures like Patch can harm the very people I try to advocate for. When this happens, is he still an ally, or does he become an enemy to the cause?

What is doing ‘good’ look like?

The easiest approach would be to identify allies with a simple cost/benefit analysis. Within that framework, Patch’s philanthropy and humanitarian clown tours would land him solidly in the ‘ally’ category. Even so, his opinions can compromise the respect for people with mental health disorders, at a serious cost for those affected.

The communal farmhouse - a place of comfort.

Ultimately, I believe allies are anyone who helps, and Patch helps. According to the caretakers at the Gesundheit! Institute, much of the steady funding for the Institute comes from people with mental illnesses who were helped by Patch and put him in their wills. He does not help everyone, and he may even do some damage along the way, but his good is tangible. To be sure, Patch (and many of those at Gesundheit!) hold unscientific views. I heard everything from the moral model of psychiatric disorders to shamanism and practical magic (the latter two coming from the land managers, not Patch). As a scientist, I do not share those ideas. Even so, I recognize the utility in including everyone who shares the mission to help alleviate the suffering of mental illness as partners.

I loved my time at the Gesundheit! Institute. I truly did. I went to clowning workshops led by an Italian couple who spent their earlier years in a free love commune where they housed “the crazies that the crazy hospital kicked out.” I communally cleaned, ate, gardened, and slept. I connected on a human level in the absence of technology. I was recharged, reenergized, and rejuvenated. Even with objectives and missions so different from mine, I am honored to call them friends, and thankful to call them allies.

References

[1] Ko H-J, Youn C-H. (2011). Geriatrics & Gerontology International 11: 267-74.

[2] Low LF, Goodenough B, Fletcher J, Xu K, Casey AN, Chenoweth L, Fleming R, Spitzer P, Bell JP, Brodaty H. (2014). Journal of the American Medical Directors Association 15: 564-9.

[3] Weisenberg M, Tepper I, Schwarzwald J. (1995). Pain 63: 207-12.

[4] Bennett MP, Zeller JM, Rosenberg L, McCann J. (2003). Alternative Therapies in Health and Medicine 9: 38-45.

[5] McCreaddie M, Wiggins S. (2008). Journal of Advanced Nursing 61: 584-95.

[6] Martin RA. (2001). Psychological bulletin 127: 504-19.

[7] Schomerus G, Angermeyer MC. (2008). Epidemiologia e psichiatria sociale 17: 31-7.

[8] Parcesepe AM, Cabassa LJ. (2013). Administration and policy in mental health 40: 10.1007/s10488-012-0430-z.

[9] Hinshaw SP, Stier A. (2008). Annual Review of Clinical Psychology 4: 367-93.

[10] Feldman DB, Crandall CS. (2007). Journal of Social and Clinical Psychology 26: 137-54.

[11] Salomon K, Jin A. Diathesis-stress model. In: Gellman MD, Turner JR, editors. Encyclopedia of behavioral medicine. New York, NY: Springer New York; 2013. p. 591-2.

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Ahlgrim, N. (2017). Allies and Enemies in the Fight for Mental Health Reform. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2017/11/allies-and-enemies-in-fight-for-mental.html

Check out our 8.4 Special Issue on head transplantation!

Image courtesy of Flickr user ellajphillips.

AJOBN is proud to announce that our 8.4 Special Issue on head transplantation is live. This issue features posts from Dr. Paul Root Wolpe (“Ahead of Our Time: Why Head Transplantation is Ethically Unsupportable”) and Dr. Sergio Canavero and Ren Xiaoping (“HEAVEN IN THE MAKING BETWEEN THE ROCK (the Academe) AND A HARD CASE (a Head Transplant)”). This issue is being published amongst a flurry of news coverage surrounding head transplantation. Though Dr. Canavero has been planning and promoting his idea for a head transplantation surgery for the last several years (watch his 2015 TedTalk entitled, “Head Transplantation: The Future Is Now”), the actual transplant is scheduled to occur by the end of this year. In fact, just a few days ago Canavero announced that he has successfully completed a head transplant surgery on a human corpse. Karen Rommelfanger and Paul Boshears wrote the editorial piece for the 8.4 issue and also recently released a Newsweek article discussing Canavero’s upcoming head transplant surgery on a live patient.



Rommelfanger and Boshears state,

“We have been disappointed by the initial responses from experts weighing in on the matter. So far the general response has been either to mock the character of Sergio Canavero, the neurosurgeon proposing the operations, or ignore the subject in the hope it goes away. But we think these opinions and the reporting on this procedure has missed two critical questions: Why China? Why now?”

Sergio Canavero, image courtesy of Flickr.

In his article for Issue 8.4, Canavero states,

“Actually, not since Galileo has a scientific idea received so much scathing remarks and generated so much acrimony - even at a personal level- amid the medical, surgical, and ethical community than HEAVEN (Canavero 2013). Today this idea no longer faces up to the Catholic Church (at least not directly), but to its current Western substitute: the Academe. However, while the Catholic Church invited Galileo to defend his thesis, the academic world did not. As thousands of doctors from around the world wrote to be part of this effort (including several who had plans for a head/brain transplant themselves!), no single mainstream official association, on the back of media requests, contacted us for more details (some even refused to answer those requests!). Even worse, as proven by several conferences we have been invited to, surgeons and other professionals had not read our literature (“not enough time!”) and the supposed impossibility of reconnecting the spinal cord was based on nothing more than outdated notions on spinal anatomophysiology.”

Paul Root Wolpe

While Wolpe responds with,

“They claim that they have been the subjected to the most scathing remarks and acrimony since Galileo(!). Yet, their provocative use of the acronym HEAVEN for the procedure itself, their mis-citing of Collins and Pinch’s book “The Golem: What You Should Know about Science” to defend their practices, and their lack of convincing evidential support and ethical sensitivity for such an ethically fraught and unprecedented surgical undertaking, all point to a kind of social and scientific tone-deafness that might have been avoided with a more scientifically and ethically rigorous, transparent, and collegial approach to the endeavor.”

Read Canavero’s and Wolpe’s articles in their entirety and the rest of the 8.4 issue here. You can also revisit one of our past posts on head transplants here. We ask that you keep a level head as you read.

Summary of what you (may have) missed at last week’s International Neuroethics Society meeting!

Image courtesy of Gillian Hue.

The AJOBN Editorial team recently returned from the 11th annual International Neuroethics Society (INS) meeting, which took place on November 9-10th in Washington, DC. The theme for the meeting was Honoring our History, Forging our Future, and it brought together scientists, philosophers, professionals, and scholars from over 10 countries to both summarize the first 15 years of the neuroethics field and to discuss our prospective future. The day and a half conference included plenary lectures, a public forum, panel discussions, and a poster session, and addressed topics ranging from the development of lying in children to the neuroethical considerations that accompany the use of transcranial direct current stimulation (tDCS).

In case you didn't get the chance to attend the conference this year, here is a brief summary of what you missed (a full program recap can be found here).

Image courtesy of Gillian Hue.

The conference opened on Thursday afternoon with a plenary lecture delivered by Remi Quirion, the Chief Scientist of Quebec, who discussed the history of neuroethics and where he thinks the field will go moving forward. This was followed by a riveting panel discussion entitled, “Neuroscience, Communication, and Public Engagement,” which was moderated by chief executive officer of AAAS, Alan Leshner, and featured Joseph J. Fins from Weill Cornell Medical College, Tali Sharot from University College London, and Ed Yong from The Atlantic. This panel focused on the interaction between scientists and the media and incorporated discussion of the Goldwater Rule and science journalism. This panel was followed by the annual Ambassador Session (this year’s session was entitled, “Reflecting on our International Roots and Planning our Collaborative Futures”), where liaisons from neuroethics research efforts around the world summarized what progress in neuroethics looks like in each country. Perspectives from Korea (Jinni Jeong), The Kavli Foundation (Caroline Montojo), the US BRAIN Initiative (Khara Ramos), and the EU Human Brain Project (Arleen Salles) were represented. The session was co-moderated by Emory Center for Ethic Neuorethics Program Director Karen Rommelfanger who spoke about her work creating the Global Neuroethics Summit. The day closed out with a public program entitled, “To Tell the Truth!” This session included talks by Elizabeth Loftus from the University of California, Irvine, who spoke about the validity of our memories; Victoria Talwar from McGill University, who spoke about the development of lying in children; and Charles Dike from Yale University School of Medicine, who spoke about pathological lying.

Friday morning began with a plenary lecture from Arthur Caplan of NYU School of Medicine that was a call to action for the field of neuroethics—Caplan emphasized that we should spend time discussing and engaging the neuroethical dilemmas happening now, instead of speculating about predicted dystopian futures. The morning continued with a panel entitled, “The Brain in Context,” which featured Moriah Thomason of Wayne State University, Martha Farah of the University of Pennsylvania, and Herve Chneiweiss of Ecole des Neurosciences de Paris. This panel emphasized the multidimensional factors that affect neurodevelopment. This was followed by a panel on addiction policymaking entitled, “Legal Responsibility, Agency, and Addiction Neuroethics: Reconciling Frameworks for Policymaking.” This panel featured Rachel Wurzman from the University of Pennsylvania Medical School; Jessica Birkett from the University of Melbourne; and Stephen J. Morse from the University of Pennsylvania Law School, who debated the claim that “addiction is a brain disease,” and discussed where to place responsibility and how to punish and/or treat addiction.

Image courtesy of Gillian Hue.

After a lunch break, the afternoon continued with two concurrent sessions on neurotechnology (“Ethics of Neuroscience and Neurotechnology” with Frederic Gilbert from University of Washington, Merlin Bettlinger from Charite-Universitatsmedizin Berlin, and Anna Wexler from the University of Pennsylvania) and law (“Neuroscience of the Law” with Andreas Kuersten from the University of Pennsylvania Law School, Nicholas Sinclair-House from the University of Sussex, and Jason Kerkmans from the consulting firm, MINDSET). The conference closed out with two plenary lectures given by Karola Kreitmair from Stanford University and Patricia Churchland from the University of California, San Diego. Kreitmair enumerated seven criteria that she feels should be applied in the development of ethical consumer neurotechnologies, while Churchland discussed how neuroethics has helped us understand our social lives and moral behavior.

If you missed this year's annual INS conference, don't fret. INS is already planning its next conference in San Diego in November 2018—check out neuroethicssociety.org for updates on the meeting program and registration details. We will also be posting more in-depth summaries of some of the sessions from this year’s conference in the coming weeks, so stay tuned!

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Hoffman, C. (2017). Summary of what you (may have) missed at last week’s International Neuroethics Society meeting! The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2017/11/summary-of-what-you-may-have-missed-at.html

International governance of Neuroscience and Neurotechnology: Whom to trust with the assessment of future pathways?

By Nina María Frahm

Nina María Frahm is a research fellow and PhD candidate at the Munich Center for Technology in Society, Technical University Munich. Previously, she obtained a BA in European Studies and an MSc in Science and Technology Studies at Maastricht University, and was a research fellow at the Technical University of Berlin, where she investigated heterogeneous cultures of cooperation in collaborative forms of research and development of emerging technologies. Her interest in the crossroads of science, technology, and public policy was fueled during a junior research position at University of Quilmes, Buenos Aires, where she conducted a project on technologies for social inclusion. Her current interest in neuroethics focuses on different cultures of responsible knowledge-making in emerging brain science, and the limits and opportunities these cultures represent for transnational neuroscience. 

There is a growing consensus about the need to better align neuroscience and neurotechnology (NS/NT) with societal needs, values, and expectations. In particular, researchers and policy-makers are increasingly calling for better international coordination of neuroscientific research and neuroethical consultation.

One major challenge for establishing international governance principles in NS/NT is the difference in national and regional cultures of integrating society into research and innovation, which is a crucial prerequisite to achieving a sustainable and socially robust agenda. A comparative perspective on European and American brain projects and key reports reveals such substantial differences. In Europe, the main emphasis has been on ‘Responsible Research and Innovation’ frameworks and corollary public engagement mechanisms for neuroscience. In contrast, the U.S. has focused primarily on ‘Ethical, Legal, Social Implications’ (ELSI) frameworks and bioethical expert assessments, with a smaller role for lay publics.

At the heart of this divergence is a difference in understanding of who we trust with the assessment of future pathways in NS/NT. Different political cultures embrace questions of risk and uncertainty in emerging neurotechnology in different ways. Attempts to mainstream brain science on a global scale might profit from being sensible towards regional and national political commitments to the inclusion of society into neuroscientific advancements. In these situations, some scholars have argued for a model of ‘epistemic subsidiarity’ (Jasanoff, 2013) in which these fundamental commitments are calibrated and guaranteed, which is paramount to addressing the grand challenges for global brain sciences in the future.

European Neuroscience and Society

The European Citizen Deliberation 'Meeting of the Minds,'

image courtesy of dialogbasis.

Brainscience in Europe, for example, is deeply embedded in the growing European commitment to Responsible Research and Innovation (RRI). Drawing heavily on previous social science research on the Public Understanding of Science and Technology (Wynne, 1992; Irwin, 2001), Public Engagement (Wynne, 2006; Stilgoe et al., 2014), Anticipatory Governance (Barben, 2008; Guston 2013), Constructive Technology Assessment (Rip 2008), and Sociotechnical Integration (Fisher 2008), as well as on strong traditions of deliberative and participatory democracy in countries such as Denmark and the Netherlands, RRI has become a ‘cross cutting issue’ in the European Commissions’ Horizon2020 framework program. The political commitment to this inclusive form of scientific and technological governance builds on repeated experiences in Europe with public controversy around and opposition to the unprepared push of emerging technologies into society (e.g. debates around Nanotechnology and Genetically Modified Organisms) and the risks of such resistance to the widespread dissemination of technological innovations.

Key to this framework is the upstream engagement of society in the governance of emerging technologies through a variety of tools, in which the general public is considered as an active partner in knowledge co-creation, the role of the expert is one of facilitation (not authority), and the touchstone of validity is robustness in the real world (not in the lab). Taken seriously, RRI is hence a move towards democratizing sources of assessing the perils and pitfalls of emerging technologies, including neurotechnology— an ambitious project, which is still very much in the making and, to be fair, has been taken up rather patchily by member states of the European Union (Mejlgaard and Griessler, 2016).

Nevertheless, talk and practice of responsibility is prominent in European recommendations on NS/NT, as well as in European brain projects. For example, the most significant European reports in the field, the Royal Society’s ‘Brain Waves’ series (2011) and the Nuffield Council on Bioethics’ ‘Novel Neurotechnologies’ report (2013), call for the principle of responsibility for the governance of neuroscience. According to the authors, this includes accountable public engagement practices in neuroscientific research and innovation governance. To date, the only recommendation brought forward by citizens themselves on the future handling of neuroscience and technology has taken place in Europe: the Meeting of Minds European Citizen Deliberation. This large public engagement exercise, which has brought together 126 participants from all over Europe, already took place in 2006 and resulted in an extensive list of recommendations on questions such as regulation and control, normalcy vs. diversity, and the equal access to treatment. Informed by the new governance regime of RRI, European brain projects such as the HBP, BNCI Horizon 2020, and BrainLinks-BrainTools feature new mechanisms for the responsible conduct of brain science and the early integration of the public into ethical assessments, such as participatory foresight labs (HBP) or User Centered Design (BNCI Horizon2020). While such exercises might not yet be seen as authoritative decision-making instruments, experiments with public engagement represent an increasing trend in Europe to open up knowledge-making for the governance of neuroscience to society at large. 

American Neuroscience and Society

Former President Barack Obama speaking about the BRAIN

Initiative, image courtesy of Flickr user Open Knowledge.

Sources of brain science assessment in the U.S., in contrast, are operating mainly under the framework of ‘Ethical, Legal, and Social Implications’ (ELSI). Drawing on roots in the Human Genome Project, ELSI approaches – like RRI – are striving for better integration and anticipation of societal needs and concerns in neuro-innovation. Unlike its European counterpart, however, the impact assessment and foresight is mostly left to scientific experts, with a strong preference for professional ethicists and other powerful stakeholders, such as industry or the military. Here, the general public more is frequently considered to be lacking the required knowledge and skills for assessing the risks and benefits of complex technologies such as NS/NT, and great efforts are put into strengthening the scientific and ethical ‘literacy’ of and ‘outreach’ to society.

This preference for including societal concerns through expert bodies is also apparent in two of the most prominent U.S. reports on NS/NT – Gray Matters Volumes I and II – which were drafted by the Presidential Commission for Bioethics (2014). Albeit the terminology of responsibility, engagement, and early integration of ethics is used in these reports, to my knowledge there is no institutionalized practice for putting these recommendations into action. The U.S. Brain Research through Advancing Innovative Neurotechnologies (BRAIN) initiative, which was initiated by the BRAIN 2025 report, covers questions of neuroethics through a voluntary, unpaid multi-council working group that consists of members of the U.S. American regulatory apparatus and academia. A similar construct can be found in the BRAIN Initiative’s partner institution, the Defense and Advanced Research Projects Agency (DARPA), where an expert panel meets regularly to discuss ELSI issues in neuroscience and technology.

Given these national differences in public knowledge-making about the brain, frameworks and mechanisms for aligning NS/NT with society at an international level will likely face considerable challenges and will require cautious negotiation. Simply agreeing on “responsible and ethically sound conduct and application of neuroscience” alone will not suffice to straddle these vastly different institutionalized traditions of technology assessment. This challenge becomes even more exigent when including other emerging neuroscience leaders such Korea, Japan, China or Latin America, where the commitment for responsible conduct in NS/NT rest on yet different social, economic, and institutional foundations. Eventually, the perceived need to harmonize the governance of NS/NT across the globe will have to find an appropriate model of subsidiarity for countries and regions to maintain compatibility with local values and participatory cultures and will need to continue emphasizing communicating and learning from each other’s principles and procedures for assessing shared futures.

References

Barben, D., Fisher, E., Selin, C. and Guston, D.H. (2008) Anticipatory governance of nanotechnology: Foresight, engagement, and integration. In: Hackett, E.J. et. al. (Eds.) The Handbook of Science and Technology Studies. Cambridge, MA: The MIT Press, pp. 979–1000.

Fisher, E. et. al. (2006) Midstream Modulation of Technology: Governance from Within. Bulletin of Science, Technology and Society, Vol. 26 (6).

Guston, D. (2013) Understanding anticipatory governance. Social Studies of Science, Vol. 44(2): 218-242.

Irwin, A. (2001) Constructing the scientific citizen: science and democracy in the biosciences. Public Understanding of Science, Vol. 10(1): 1-18.

Jasanoff, S. (2013) Epistemic Subsidiarity – Coexistence, Cosmopolitanism, Constitutionalism. European Journal of Risk Regulation, Vol. 2: 133-141.

Mejlgaard, N. and Griessler, E. (2016): Monitoring RRI in Europe: approach and key observations. In: Lindner, R. et. al. (Eds.): Navigating Towards Shared Responsibility in Research and Innovation. Approach, Process and Results of the Res-AGorA Project, Karlsruhe, p. 115-118.

Rip, A. and Te Kulve, H. (2008) Constructive Technology Assessment and Sociotechnical Scenarios. In: Fisher, E. et. al. (Eds.), The Yearbook of Nanotechnology in Society, Volume I: Presenting Futures, Berlin etc: Springer, pp.49-70.

Stilgoe, J., Lock, S.J., Wilsdon, J., 2014. Why should we promote public engagement with science? Public Understanding of Science, Vol. 23: 4–15.

Wynne, B. (1992) Misunderstood misunderstanding: social identities and public uptake of science. Public Understanding of Science, Vol.1(3): 281-304.

Wynne, B. (2006) Public Engagement as a Means of Restoring Public Trust in Science – Hitting the Notes, but Missing the Music? Community Genetics, Vol. 9: 211-220.

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Frahm, Nina. (2017). International governance of Neuroscience and Neurotechnology: Whom to trust with the assessment of future pathways? The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2017/11/international-governance-of.html