Stakeholder engagement in policy development: challenges and opportunities for human genomics

Along with rapid advances in human genomics, policies governing genomic data and clinical technologies have proliferated. Stakeholder engagement is widely lauded as an important methodology for improving clinical, scientific, and public health policy decision making. The purpose of this paper is to examine how stakeholder engagement is used to develop policies in genomics research and public health areas, as well as to identify future priorities for conducting evidence-based stakeholder engagements. We focus on exemplars in biobanking and newborn screening to illustrate a variety of current stakeholder engagement in policy-making efforts. Each setting provides an important context for examining the methods of obtaining and integrating informed stakeholder voices into the policy-making process. While many organizations have an interest in engaging stakeholders with regard to genomic policy issues, there is broad divergence with respect to the stakeholders involved, the purpose of engagements, when stakeholders are engaged during policy development, methods of engagement, and the outcomes reported. Stakeholder engagement in genomics policy development is still at a nascent stage. Several challenges of using stakeholder engagement as a tool for genomics policy development remain, and little evidence regarding how to best incorporate stakeholder feedback into policy-making processes is currently available.     

An Australian childhood obesity summit: the role of data and evidence in 'public' policy making

Background

Overweight and obesity in Australia has risen at an alarming rate over the last 20 years as in other industrialised countries around the world, yet the policy response, locally and globally, has been limited. Using a childhood obesity summit held in Australia in 2002 as a case study, this paper examines how evidence was used in setting the agenda, influencing the Summit debate and shaping the policy responses which emerged. The study used multiple methods of data collection including documentary analysis, key informant interviews, a focus group discussion and media analysis. The resulting data were content analysed to examine the types of evidence used in the Summit and how the state of the evidence base contributed to policy-making.

Results

Empirical research evidence concerning the magnitude of the problem was widely reported and largely uncontested in the media and in the Summit debates. In contrast, the evidence base for action was mostly opinion and ideas as empirical data was lacking. Opinions and ideas were generally found to be an acceptable basis for agreeing policy action coupled with thorough evaluation. However, the analysis revealed that the evidence was fiercely contested around food advertising to children and action agreed was therefore limited.

Conclusion

The Summit demonstrated that policy action will move forward in the absence of strong research evidence. Where powerful and competing groups contest possible policy options, however, the evidence base required for action needs to be substantial. As with tobacco control, obesity control efforts are likely to face ongoing challenges around the nature of the evidence and interventions proposed to tackle the problem. Overcoming the challenges in controlling obesity will be more likely if researchers and public health advocates enhance their understanding of the policy process, including the role different types of evidence can play in influencing public debate and policy decisions, the interests and tactics of the different stakeholders involved and the part that can be played by time-limited yet high profile events such as Summits.

     

Immune responses to dietary antigens: oral tolerance

The concept of immunologically mediated tolerance to food antigens through exposure to mucosal antigen has been the subject of continuous scientific debate. After a decline in interest in the mid-1980s, oral tolerance has again attracted the attention of immunologists. Here, Stephan Strobel and Allan Mowat discuss how this central immunological principle has potential new therapeutic applications for the treatment of autoimmune, inflammatory and possibly food-allergic diseases.     

Stem cell research and the ethics of transparency

Stem cell research represents a field of scientific inquiry subject to intense public and political attention and debate worldwide. There are several reasons for this. First, it is a research endeavor surrounded by great expectations of future therapeutic benefits. Some of these expectations seem to be well founded, while others originate from adult and embryonic research enthusiasts having hyped their case. A second reason why this represents a field of public and political attention relates to deeply felt concerns regarding the moral justifiability of sacrificing potential human lives for research. The aim of this paper is to discuss different ways of making the performance of international embryonic stem cell research more transparent, and of unveiling the need for more open-minded dialog concerning the ethical costs of this research endeavor.     

Controversies Terminable Or Interminable? Some Notes on the Training Committee's Documents on Training and Education and on the Papers on Technique Presented During the Freud–Klein Controversies 1941–1945

My intervention briefly addresses the long, complex debate on technical and educational issues within British psychoanalysis during the late 1930s and 1940s. I hope to show that some of the problems discussed and the resolutions proposed by the Training Committee of the British Society during the years of the Controversies which we are commemorating are still a source of food for thought today, in spite of the fact that they belong to a specific past. I stress the importance of Strachey's ideas about an open psychoanalytic forum. This would not be the solution to all our problems, as crises and dissent are an inevitable part of the development of our discipline. However, the more transparent and the more informed we are about our past, and about the whole internal history of our discipline, including the wider cultural, scientific and socio‐political context within which psychoanalysis developed and is developing, the better chance we have of understanding our present.     

Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research

This review examines research findings in patients with myalgic encephalomyelitis in light of the current debate about this chronic multiple-symptom, multiorgan, multisystem illness and the conflicting views in medicine. These issues cannot be separated from the political opinions and assertions that conflict with science and medicine, and will be part of this review as they have enormous consequences for scientific and medical research, patients, clinicians, carers and policy makers.     

Rationale and consequences of reclassifying obesity as an addictive disorder: neurobiology, food environment and social policy perspectives

The rapid increase in the prevalence of obesity is a priority for investigators from across numerous disciplines, including biology, nutritional science, and public health and policy. In this paper, we systematically examine the premise that common dietary obesity is an addictive disorder, based on the criteria for addiction described in the Diagnostic and Statistical Manual (DSM) of Mental Disorders of the American Psychiatric Association, version IV, and consider the consequences of such a reclassification of obesity for public policy. Specifically, we discuss evidence from both human and animal studies investigating the effects of various types and amounts of food and the food environment in obese individuals. Neurobiological studies have shown that the hedonic brain pathways activated by palatable food overlap considerably with those activated by drugs of abuse and suffer significant deficits after chronic exposure to high-energy diets. Furthermore, food as a stimulus can induce the sensitization, compulsion and relapse patterns observed in individuals who are addicted to illicit drugs. The current food environment encourages these addictive-like behaviors where increased exposure through advertisements, proximity and increased portion sizes are routine. Taking lessons from the tobacco experience, it is clear that reclassifying common dietary obesity as an addictive disorder would necessitate policy changes (e.g., regulatory efforts, economic strategies, and educational approaches). These policies could be instrumental in addressing the obesity epidemic, by encouraging the food industry and the political leadership to collaborate with the scientific and medical community in establishing new and more effective therapeutic approaches.     

Mired in the quagmire of uncertainty: The "catch-22" of embryonic stem cell research

Pluripotent human embryonic stem (ES) cells hold remarkable therapeutic potential, but their use is fraught with moral, ethical, scientific, and political concerns. In this essay, I discuss how an odd combination of patent issues, presidential policy, market uncertainties, and evolving Food and Drug Administration regulations have together hindered the progress of ES cell research in the United States of America. This coalescence of issues is unique. I suggest that these factors explain why the United States has not been a dominant player in advancing ES research. I predict that small, noncontroversial changes would go far in ameliorating many of the roadblocks that now exist. Most of these changes would not require a change in policy or even action by the U.S. government; a simple clarification and definition would suffice.The reason these changes have met solid resistance is suggested to derive from financial rather than moral, ethical, or scientific issues.     

Countertransference and Politics

SUMMARY There is a more political spirit abroad in depth psychology. In the paper, I set out to politicise the countertransference and clinical theorising about it. Clinical depth psychology is a base for an integration of subjectivity into political discourse. The various ways in which clinicians have managed to overcome anxieties about 'using' the countertransference may be helpful to those in politics trying to overcome anxieties about using the subjective factor in political debate and policy formation. I suggest that a political linkage between therapist/analyst and patient may be the element that makes the existence of countertransference as communication possible.     

Intergenerational Transmission of Influence and Family Pattern: Some French Perspectives

French psychoanalysis offers a wide range of studies on the problems of intergenerational transmission within families. In this paper I focus on four authors whose work, though important, has remained largely untranslated. The paper studies Serge Lebovici's emphasis on ‘fantasmatic interactions’ and Alain de Mijolla's reflection on ‘unconscious identification’ and strives to understand how Claude Nachin and Serge Tisseron, two followers of Nicolas Abraham and Maria Torok, have presented and developed further ideas of ‘the phantom’ and ‘the crypt’. I try to place the debate within its French context and argue for its relevance in presenting building blocks of understanding in an important area of concern to psychoanalysis.     

Political economy and population health: is Australia exceptional?

Background

It is accepted knowledge that social and economic conditions – like education and income – affect population health. What remains uncertain is whether the degree of inequality in these conditions influences population health and if so, how. Some researchers who argue that inequalities are important, say there is a relationship between political economy, inequality and population health. Their evidence comes from comparative studies showing that countries with neo-liberal political economies generally have poorer population health outcomes than those with social or Christian democratic political economies. According to these researchers, neo-liberal political economies adopt labour market and welfare state policies that lead to greater levels of inequality and poorer population health outcomes for us all.

Discussion

Australia has experienced considerable social and economic reforms over the last 20 years, with both major political parties increasingly adopting neo-liberal policies. Despite these reforms, population health outcomes are amongst the best in the world.

Summary

Australia appears to contest theories suggesting a link between political economy and population health. To progress our understanding, researchers need to concentrate on policy areas outside health – such as welfare, economics and industrial relations. We need to do longitudinal studies on how reforms in these areas affect levels of social and economic inequality, as well population health. We need to draw on social scientific methods, especially concerning case selection, to advance our understanding of casual relationships in policy studies. It is important to find out if, and why, Australia has resisted the affects of neo-liberalism on population health so we ensure our high standards are maintained in the future.

     

HIV infection and health policy

The epidemic of human immunodeficiency virus (HIV) infection has given an urgency to health policy dilemmas that have long been brewing. By exacerbating long-standing problems, the epidemic has surpassed what we find tolerable and has pressured politicians and health officials to find solutions. Whether the approaches they take will substantially contribute to solving the underlying problems is unclear. Many persons engaged in health policy believe that in responding to the AIDS crisis we may be defining our society for future historians. Judgement may be passed on how compassionately we care for those who are sick, how effectively we choose our public health measures, and how creatively we apply our scientific knowledge. This paper addresses six challenges that face policymakers: (a) protecting people from discrimination, (b) designing testing and screening programs, (c) developing safe and effective antiviral drugs, (d) planning for future vaccine trials, (e) organizing and delivering health care to sufferers of HIV infection, and (f) financing such health care.     

Science policy, science funding, and the science community

The ongoing federal budget crisis has led to extensive debate over how much money the federal government should spend on scientific research. In the struggle for limited funds, many advocacy groups will covet the large sums proposed for science research, and the scientific community may be called upon to justify its large share of the discretionary funding, especially the large increases for some science agencies and "big science" projects. Many would instinctively support the assertion that scientific progress is a cornerstone of national well-being, but the connection between strong federal support of research and vigorous economic growth or societal vitality is not straightforward. Two variables--science and technology, not science alone, are basic to the larger issues of the economy and social welfare. Federal policy must facilitate development in coordination with support for basic science. Scientists, in turn, must help foster a perspective that encompasses research and development as a whole and that seeks to identify explicitly the connections between the nature of the R&D effort and economic vitality and quality of life. Furthermore, society needs a free flow of information between all members of the science and technology community and an end to the artificial and harmful barriers between them. The science community must focus on setting priorities, refining science and technology policy to maximize available resources, and convincing voters that science can make crucial contributions to the long-term welfare of the nation.     

Due Care, Not Prohibition of Expert Opinions

The scientific foundation for clinicians' opinions in child custody cases is weak, but it is both unnecessary and undesirable to exclude mental health professionals from the legal process. Avoidance of ultimate-issue opinions obviates the problems involved in expert testimony in the context of a limited research base and an ambiguous and value-laden legal standard. Psychologists may be able to contribute to legal policy-making about child custody standards, but the proper forum for doing so is probably the legislature. Even in that context, it is not clear that mental health professionals should have special standing in the public debate.     

Complex mediascapes,complex realities: critically engaging with biotechnology debates in Ghana

The recent increase in research and commercialization of genetically modified (GM) crops in Africa has resulted in considerable and understandable interest from farmers, scholars, and practitioners. However, messy situations are often hard to critically engage in from afar, and the recent article published by Braimah et al. [(2017). Debated agronomy: Public discourse and the future of biotechnology policy in Ghana. Global Bioethics. doi:10.1080/11287462.2016.1261604] presents certain claims that further obfuscate – rather than clarify – an already complex landscape. In this commentary I first seek to clarify particular details of the Ghanaian “GMO” (as GM crops are colloquially called in Ghana) story with particular focus on certain actors and their stances. Next, I highlight some methodological shortcomings of Debated Agronomy and correct certain dubious quotations and claims. Finally, I suggest a more ethnographically and discourse-focused methodology to gain much needed insight into how Ghanaians are actively molding, contesting, and questioning GM discourse, funding, and use.     

Taking Your Own Side in the Argument

This contribution is written in response to Helen Morgan's paper ‘Whiteness: A problem for our times’. A distinctive feature of her writing and thinking in this essay, and her new book, is how she moves easily and freely between psychoanalytic, sociological, political and psychological frameworks of understanding. In doing so her work exemplifies something that the psychoanalytic community has mostly been poor at achieving – a recognition of both its distinctive and unique potential to illuminate social and political processes, and a parallel acknowledgement of its need to enter into equilateral dialogue with other intellectual paradigms. Social and political life is historical, specific, local and complex, and not amenable to reductionist or universalizing modes of analysis and engagement. Through some examples I aim to add to Helen's very thoughtful and well researched paper, to show how psychoanalysis needs to respect other languages and methodologies for engaging with the world, render its own more accessible to non-specialists, and relinquish its tendency to assume the status of a ‘master discourse’.     

Geneticists' views on science policy formation and public outreach

Though much research about the public's views of scientists, genetic research and its moral, ethical, and social implications exists, little has been done to investigate how scientists view their own role(s) in public discussions and policy formation related to genetic research and technologies. We interviewed 20 academic geneticists in the United States about their perceptions of the roles they and others (e.g., professional societies, the public, ethicists, and elected officials) do and should play in the formation of science policy, the communication of science to the public, and the public discussions of moral and ethical issues raised by scientific advances. The participants in our study thought that scientists should be more actively involved in public outreach and science policy formation, but frequently they felt ill-equipped and unsupported by their peers and institutions to pursue these activities. Furthermore, many were skeptical of or did not trust elected officials--who they consider uninformed about the issues and too driven by political agendas--to formulate sound science policy. They do, however, have faith in the ability of scientific societies to influence policy effectively, and some thought that societies should play a larger role, both in science policy and as a liaison between scientists and the public. Finally, participants offered suggestions for increasing the involvement and influence of scientists in science-policy formation and public discourse.     

Toward mapping the biology of the genome

This issue of Genome Research presents new results, methods, and tools from The ENCODE Project (ENCyclopedia of DNA Elements), which collectively represents an important step in moving beyond a parts list of the genome and promises to shape the future of genomic research. This collection sheds light on basic biological questions and frames the current debate over the optimization of tools and methodological challenges necessary to compare and interpret large complex data sets focused on how the genome is organized and regulated. In a number of instances, the authors have highlighted the strengths and limitations of current computational and technical approaches, providing the community with useful standards, which should stimulate development of new tools. In many ways, these papers will ripple through the scientific community, as those in pursuit of understanding the "regulatory genome" will heavily traverse the maps and tools. Similarly, the work should have a substantive impact on how genetic variation contributes to specific diseases and traits by providing a compendium of functional elements for follow-up study. The success of these papers should not only be measured by the scope of the scientific insights and tools but also by their ability to attract new talent to mine existing and future data.     

THE STATUTORY REGULATORY BODY PERSPECTIVE

ABSTRACT This paper surveys the legislative context for the statutory regulation of psychotherapy as in summer 1999. It looks at the public policy of regulation. The Parliamentary progress of the Health Bill (Health Act, as of 30 June 1999) is examined and its successful outcome for professions. The experience of State Registration for a profession is explored and benefits elaborated. The options for how the profession might take up the new opportunities are presented and a timescale indicated.
This is an overview of the topic and cannot attempt to do it justice in detail. Areas such as the history of regulated professions, how educational approvals are conducted, devolution, complaints and conduct procedures and many others will have to be dealt with elsewhere.     

Adolescence as a gateway to adult health outcomes

Adolescence has long been regarded as a transition from childhood to adulthood. More recently it is become a concern of those wishing to avoid adverse health outcomes during middle and late adulthood. Most of this effort has been focused on behavioural risk factors such as tobacco and excessive alcohol use, physical exercise habits, dietary habits, as well as sexual and injury-related behaviours. The concern is that these habits are established during adolescence, continue into adulthood, and come to constitute ongoing risk factors for adverse health outcomes during middle and late adulthood. There is good reason to criticize this approach. These behaviours are themselves shaped by adolescents’ living and working conditions and even then constitute a small proportion of the variance predicting adverse health outcomes during adulthood. More complex models of how adolescence serves as a gateway to adult health outcomes are presented. These are the socio-environmental, public policy, and political economy approaches. The argument is made that adolescence is a period during which public policy plays an especially important role in predicting future health outcomes. Yet, these public policies influence health all across the life span with adolescence providing only one of many important periods during which public policy shapes health prospects during middle and later adulthood. Ultimately one should consider a range of approaches ranging from the behavioural to the political to examine how adolescence serves as a gateway towards future adult prospects. An Adolescent Gateway Towards Adult Health Model is provided to assist in this process.