The passing of the Patient Protection and Affordable Care Act is a triumph for the field of public health. Its inclusion of many provisions intended to prevent illness and promote health endorses the core belief of public health as expressed by Dr. Georges Benjamin, the long-time executive director of the American Public Health Association, in a Washington Post opinion piece praising ACA for “provid[ing] care as far upstream as possible… [in order to] reduce (...) costs by identifying problems early and then managing them to reduce or eliminate the need for more costly care in the future.” In this article, I consider the conflict between ACA’s adoption of public health goals seeing population health and societal interests in protecting individuals from discrimination based on their health. The article focuses on one aspect of ACA which seeks to lower the costs to employers who provide health insurance for their employees by making it easier for them to offer their employees substantial incentives for participating in and meeting the goals of employer-sponsored Wellness Programs. (shrink)

The prelims comprise: Introduction Public Health Ethics The Public Health Interest in Genetic Screening Discussion Conclusion.

In recent years, genetically engineered (GE) mosquitoes have been proposed as a public health measure against the high incidence of mosquito-borne diseases among the poor in regions of the global South. While uncertainties as well as risks for humans and ecosystems are entailed by the open-release of GE mosquitoes, a powerful global health governance non-state organization is funding the development of and advocating the use of those bio-technologies as public health tools. In August 2016, the (...) US Food and Drug Agency (FDA) approved the uncaged field trial of a GE Aedes aegypti mosquito in Key Haven, Florida. The FDA’s decision was based on its assessment of the risks of the proposed experimental public health research project. The FDA is considered a global regulatory standard setter. So, its approval of the uncaged field trial could be used by proponents of GE mosquitoes to urge countries in the global South to permit the use of those bio-technologies. -/- From a public health ethics perspective, this paper evaluates the FDA’s 2016 risk assessment of the proposed uncaged field trial of the GE mosquito to determine whether it qualified as a realistic risk evaluation. -/- The FDA’s risk assessment of the proposed uncaged field trial did not proximate the conditions under which the GE mosquitoes would be used in regions of the global South where there is a high prevalence of mosquito-borne diseases. -/- Given that health and disease have political-economic determinants, whether a risk assessment of a product is realistic or not particularly matters with respect to interventions meant for public health problems that disproportionately impact socio-economically marginalized populations. If ineffective public health interventions are adopted based on risk evaluations that do not closely mirror the conditions under which those products would actually be used, there could be public health and ethical costs for those populations. (shrink)

Human rights legislation pertaining to applications of human genetic science is still lacking at an international level. Three international human rights documents now serve as guidelines for countries wishing to develop such legislation. These were drafted and adopted by the United Nations Educational, Scientific and Cultural Organization, the Human Genome Organization, and the Council of Europe. It is critically important that the international nursing community makes known its philosophy and practice-based knowledge relating to ethics and human rights, and contributes to (...) the globalization of genetics. Nurses have particular expertise because they serve in a unique role at grass roots level to mediate between genetic science and its application to public health policies and medical interventions. As a result, nurses worldwide need to focus a constant eye on human rights ideals and interpret these within social, cultural, economic and political contexts at national and local levels. The purpose of this article is to clarify and legitimate the need for an international declaration on nursing, human rights, human genetics and public health policy. Because nurses around the world are the professional workforce by which genetic health care services and genetic research protocols will be delivered in the twenty-first century, members of the discipline of nursing need to think globally while acting locally. Above all other disciplines involved in genetics, nursing is in a good position to articulate an expanded theory of ethics beyond the principled approach of biomedical ethics. Nursing is sensitive to cultural diversity and community values; it is sympathetic to and can introduce an ethic of caring and relational ethics that listen to and accommodate the needs of local people and their requirements for public health. (shrink)

LANGUAGE NOTE | Document text in English ; abstract also in Chinese. 本文介紹生物倫理學與公共健康倫理學領域，並描述兩者之間的關係；文章尾聲將展望公共健康倫理學論未來既廣泛又多變的方向。本文首先簡介公共健康倫理學的本質，以及如何把其與比之更廣闊的生物倫理學作出區分，因此 需要提出公共健康倫理學的定義，以助釐清公共健康倫理的重點。隨後，本文簡述公共健康倫理學文獻的一些最新進展，包括圍繞新冠病毒、大流行病、抗菌素抗藥性、「生活方式」疾病及正義等道德問題。本文同時論及就干預 公共健康的「合法範圍」所提出的觀點之間於政治及形而上學的角力。其後本文探討公共健康倫理學所面臨的挑戰，包括其複雜又多元的性質。而且公共健康實踐高度政治化，其政治化的原因是因為公共健康影響整個人口及社區 ，而很多關於公共健康的決策由政治人物而非公共健康專家所作出。此外，公共健康倫理也因為公共健康的範圍擴展至納入非政府公共健康行動者而面臨進一步的挑戰。本文最後闡述有關公共健康的一些未來方向，包括「公共健 康觀」的出現，以作為為人熟知的健康與社會問題的形而上學框架、把該領域的認知和道德基礎去殖民化以涵蓋更廣泛的知識，以及一些包括美德在内的公共健康倫理學的理論發展。筆者建議讀者把文章視為對公共健康倫理學領 域的一部分介紹，並鼓勵他們閲讀本文所引用的論文，並以這些論文作為進入所涵蓋主題的大量文獻之門徑。公共健康倫理學是一個相對年輕的領域，而該領域有著巨大的成長及發掘更多新概念的潛力。 This essay begins by introducing the fields of bioethics and public health ethics and describing the relationship between them. It ends with some glimpses into the wide-ranging and discourse-changing directions of the literature on public health ethics. To open, the paper describes the field of public health ethics and how it is differentiated from the wider field of bioethics. This requires a (...) brief description of public health to clarify the nature of public health ethics. The essay then provides a brief overview of a few recent developments in the public health ethics literature, including the moral issues raised by COVID-19 and pandemics, anti-microbial resistance, ‘lifestyle’ diseases and justice. The paper also touches on the political and metaphysical tensions in views on what counts as a ‘legitimate area’ of intervention for public health. The essay then turns to a couple of challenges in the field of public health ethics, specifically the complex and multi-disciplinary nature of the field and the fact that public health practice is a highly political area. Public health is political both in the sense that it affects entire populations or communities and in the sense that many decisions about public health are made by politicians rather than public health experts. A further challenge to public health ethics is the question of what counts as ‘public health’, as the scope has been broadened to include non-governmental public health actors. Finally, the essay describes some future directions for research in public health ethics, including ‘public health view’ becoming a metaphysical framing for familiar health and social issues and decolonising the epistemic and moral foundations of the field to include a wider set of knowledge sources and values. There are also some theoretical developments that integrate virtue into public health ethics. The reader should take this essay as a partial introduction to the field, and they are highly encouraged to read the papers that are cited here and to use those papers as a gateway into the large literature on the topics covered. Public health ethics is a relatively young field, with an enormous potential for growth and new ideas. (shrink)

As a result of the increase in genetic testing and the fear of discrimination by insurance companies, employers, and society as a result of genetic testing, the disciplines of ethics, public health, and genetics have converged. Whether relatives of someone with a positive predictive genetic test should be notified of the results and risks is a matter urgently in need of debate. Such a debate must encompass the moral and ethical obligations of the diagnosing physician and the (...) patient. The decision to inform or not will vary depending on what moral theory is used. Utilising the utilitarian and libertarian theories produces different outcomes. The principles of justice and non-maleficence will also play an important role in the decision. (shrink)

Incest taboos are universal, but it is questionable whether consensual incest should continue to be illegal. The most common argument in favor of the illegalization of consensual incest appeals to genetic risks and the harm to potential offspring. In this article, we examine whether public health concern is a sufficient reason to illegalize consensual incest. We posit that indeed, incest represents a risk, but this is not reason enough to illegalize incest. For, other circumstances of sexual intercourse may (...) lead to similar risks, and yet, such practices are not illegal. While those practices may represent an added risk to public health, to forbid them as a way to improve the genetic pool would be akin to eugenic program, and that is morally objectionable. This does not imply that consensual incest ought to be legal, for there may be other good reasons to illegalize it. But they do not relate to public health and genetic risks, and consequently, medical practitioners and public health officials ought to avoid using their medical authority as a platform to make moral pronouncements. (shrink)

This paper evaluates the content of the syllabi of postgraduate courses on public health ethics within accredited schools and programs of public health in the United States in order to gain an awareness of the topics addressed within these courses. Methods: Data was gathered via the analysis of syllabi of courses on PHE. In 2012, information was requested by e-mail from the 48 schools and 86 PH programs accredited by the U.S. Council on Education for (...) class='Hi'>Public Health for 2012. The “Epidemiology and PHE Syllabi” project of the University of Miami also was consulted. A table of topics was drawn up in order to carry out content analysis of the documents. Results: Data was obtained from 25 schools and 36 accredited programs ; 36 syllabi were gathered and 75 different topics were found. Of these, 38 topics were addressed in six or more syllabi and can be grouped as follows: foundations of PHE; autonomy and its limits; infectious disease control; justice; research ethics; health education and promotion; environmental and occupational health; screening; genetics; privacy and confidentiality; and community-based practice and vulnerable populations. Conclusions: The analyzed syllabi show high variability in curricular content. The debate with regard to whether a core curriculum on PHE should be established is ongoing. The results of this work might be of interest for schools and programs of PH in other countries or regions of the world in order to develop or ameliorate their own PHE syllabi. (shrink)

Imagine a future in which a country’s government is thinking about whether to pursue human enhancement. There are several ways that humans might be enhanced, among them physical aids, pharmaceutical interventions, and genetic modification. In this imagined scenario...

In lieu of an abstract, here is a brief excerpt of the content:Public Health Ethics: Health by the NumbersMartina Darragh (bio) and Pat Milmoe McCarrick (bio)Hippocrates had nothing to say about public health. Rather, the idea that a government should protect its citizens from disease by maintaining sanitary conditions has its origin in Renaissance humanities texts, and the notion that physicians have public health responsibilities emerged in the works of such Enlightenment authors as (...) Johann Peter Frank, Benjamin Rush, and John Gregory (II, Coughlin and Beauchamp 1996). When the spread of infectious diseases such as typhoid and cholera accompanied the growth of the Industrial Revolution, England was the first to respond by passing the Public Health Act of 1848. The motivation for this reform was not based in humanitarian concerns but in the realization that unsanitary conditions were costly to industry. “... [The] founders of the public health movement were guided by nineteenth century utilitarian moral theories... the greatest good for the greatest number... accompanied by a growing appreciation for the innate value and dignity of mankind... however, the rights and autonomy of individuals have not always been respected in pursuing these important objectives” (I, Coughlin 1995, p. 1).Public health projects have dramatically improved global health status. One measure of their success is that “... most poor people now live longer, on average, than the wealthiest people a century ago” (I, Beaglehole and Bonita 1997, p. 13) These projects are not limited to such activities as disinfecting sewers. “Public health is what we, as a society, do to collectively assure the conditions in which people can be healthy. This requires that continuing and emerging threats to the health of the public be successfully countered. These threats include immediate crises, such as the AIDS epidemic; enduring problems, such as injuries and chronic illness; and impending crises foreshadowed by such developments as the toxic by-products of a modern economy” (I, Institute of Medicine (IOM) 1988, p. 1) The practice of public health has embraced this IOM challenge and includes the subspecialties of epidemiology, health promotion and education, public health administration, international health, maternal and child health, biostatistics, environmental health, and nutrition. This annotated bibliography focuses on epidemiology, [End Page 339] health promotion and education, and public health administration, and includes a wide variety of opinions on each topic.EpidemiologyAt first glance, it is hard to see what ethical issues could arise in population studies of the causes and control of illness. Disclosure of risk information in the clinical encounter is complicated by issues of uncertainty with regard to the data itself. Causation and causal inference may be affected by “wish bias,” leading to studies that use the same data but reach widely varying conclusions (II, Weed 1997). Given the complexity of the statistical calculations used to validate public health recommendations, and mass media’s portrayal of them, the public may be unintentionally deceived by population-based recommendations (V, Seedhouse 1997; II, Lupton 1995). With the addition of genetic screening, another layer of statistical complexity is added to this mix (VI, Stone and Steward 1996).Health Promotion and EducationIncreased life expectancy brought about by advances in public health has raised a new set of problems. With the realization that illness can be promoted in part by individual life-style choices, population-based recommendations about risk factors become important in the clinical encounter. This shift is not without difficulties; one author notes that he has yet to receive any risk information from his physicians, even when he asks “the experts” (V, Dugdale 1998). This may be due in part to the fact that “... public health lacks a vocabulary with which to speak about and identify commonalities among health problems experienced by very different populations” (IV, Mann 1997, p. 8). Furthermore, the mix of disciplines informing health promotion activities (sociology, psychology, recreation medicine, and the like) creates an illusion of shared ethics where none exists, which in turn leads to programs based on value systems that may not be meaningful for the populations they serve (V, Seedhouse 1997).Given these factors, a number of authors are skeptical of introducing public health measures into the clinical encounter. “We might do well to encourage people to live lives of modified hedonism so that they might... (shrink)

Genetics offers real opportunities for public health actors. Increased understanding of genetics will illuminate some of the factors that affect disease and, in many cases, will lead to more effective treatments. The recognition that phenylketonuria was caused by a metabolic defect that led to the accumulation of toxic levels of phenylalanine, an elevation that could largely be averted by adopting a low-phenylalanine diet, is an early example. Some cases of what was thought to be Sudden Infant (...) Death Syndrome, a diagnosis used when no etiology is known, now appear to have been caused by metabolic defects in fatty acid oxidation and sodium channel defects. One of the tasks that has already been undertaken by the public health sector is to ensure that genomic information is incorporated into clinical care when the robusmess of findings and their clinical utility have been well defined. (shrink)

The molecular genetic age can be said to have begun with the letter in Nature in 1953 by Watson and Crick, describing the helical structure of DNA. Some outstanding scientific work preceded that discovery, including especially the recognition by Chargaff of base-pair complementarity, but no discovery quite captured the imagination of the biomedical world as a few understated words by Watson and Crick in their famous one-page paper: "It has not escaped our notice that the specific pairing we have postulated (...) immediately suggests a possible copying mechanism for the genetic material". The manner in which genetic material was passed on from generation to generation had been decoded.That discovery was... (shrink)

Open any standard bioethics textbook, and therein can be found a host of subjects ranging from the abortion rights controversy to the morality of xenographic tissue transplantation. Just as there is a wide scope to the subject matter of bioethics, its practitioners come from a multitude of disciplines, including law, medicine, nursing, theology, philosophy, sociology, and anthropology. And yet, despite a rich variety of investigators and methods, bioethicists overlook numerous subjects that deserve to be addressed. In particular, they neglect issues (...) of public health, preventive medicine, and social medicine. Although topics such as physician-assisted suicide, prenatal genetic testing, and the ethics of new reproductive technologies constitute the contemporary canon of bioethics and deserve sustained analysis, these subjects are not so significant that they should eclipse other issues. For example, gun control policies, the regulation of food additives. immunization programs, prenatal care, leave programs enabling employees to care for dying relatives, the provision of nutrition and medical care to the homeless, and the use of emergency rooms by the most impoverished citizens are all topics neglected by bioethicists. (shrink)

The potential power of predictive genetic testing as a risk regulator is impressive. By identifying asymptomatic individuals who are at risk of becoming ill, predictive genetic testing may enable those individuals to take prophylactic measures. As new therapies become available, the usefulness of genetic testing undoubtedly will increase. Further, when a person's family medical history indicates a propensity towards a particular genetic disease, a negative test result may open up otherwise denied opportunities by showing that this person has not inherited (...) suspect genes. In the latter type of case, a negative test result may reassure the individual that pursuing a particular course of action is worthwhile, or may convince prospective employers that the individual will be a serviceable employee. (shrink)

American healthcare -- Bioterror and bioart -- State of emergency -- Licensed to torture -- Hunger strikes -- War -- Cancer -- Drug dealing -- Toxic tinkering -- Abortion -- Culture of death -- Patient safety -- Global health -- Statue of security -- Pandemic fear -- Bioidentifiers -- Genetic genocide.

While the realm of bioethics has traditionally focused on the rights of the individual and held autonomy as a defining principle, public health ethics has at its core a commitment to the promotion of the common good. While these two domains may at times conflict, concepts arising in one may also be informative for concepts arising in the other. One example of this is the concept of a “right not to know.” Recent debate suggests that just as there (...) is a “right to know” information about one's genetic status, there is a parallel “right not to know” when it comes to genetic information that if communicated, could be detrimental to an individual's social or psychological well-being. As new genetic technologies continue to change the nature of genetic testing and screening, it is crucial that normative frameworks to guide and assess genetic public health initiatives be developed. In this context, the question of whether a “right not to know” may also be said to exist for populations on a public health level merits attention. (shrink)

Background: Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the management of incidental results. Methods: To inform policy on disclosure of infant sickle cell disorder (SCD) carrier results, a mixed-methods study of healthcare providers was conducted in Ontario, Canada, to understand attitudes regarding result (...) management using a cross-sectional survey (N = 1615) and semistructured interviews (N = 42). Results: Agreement to reasons favouring disclosure of SCD carrier results was high (65.1%–92.7%) and to reasons opposing disclosure was low (4.1%–18.1%). Genetics professionals expressed less support for arguments favouring disclosure (35.3%–78.8%), and more agreement with arguments opposing disclosure (15.7%–51.9%). A slim majority of genetics professionals (51.9%) agreed that a reason to avoid disclosure was the importance of allowing the child to decide to receive results. Qualitatively, there was a perceived “duty” to disclose, that if the clinician possessed the information, the clinician could not withhold it. Discussion: While a majority of respondents perceived a duty to disclose the incidental results of newborn screening, the policy implications of these attitudes are not obvious. In particular, policy must balance descriptive ethics (ie, what providers believe) and normative ethics (ie, what duty-based principles oblige), address dissenting opinion and consider the relevance of moral principles grounded in clinical obligations for public health initiatives. (shrink)

Present regulations and prohibitions relating to psychoactive substances rest upon socio-historically contingent and hence arguably irrational foundations. New evidence bases located in post-genomic genetics and neuroscience hold the potential to disrupt them through demonstrating a lack of congruence between the regulations and prohibitions and the alleged and actual harms. How far might we use such knowledge to drive policy? What limits, if any, should be placed on our choices, and what attempts to influence these may be seen as acceptable? (...) This article seeks to address these questions in relation to criminal justice system and public health governance of psychoactive substance use. It will explore the implications of justifications employed in both areas to restrict free choice on the grounds of harm to the self and to others. The central argument made is that the current categorisation of psychoactive substances as lawful or unlawful is likely to become disrupted as the result of several separate discourses which converge over psychoactive substance use: enhancement, cognitive liberty and the degree to which subjective experiences of pleasure, well being and happiness might enable us to improve and maintain our health as individuals and that of society as a whole. In my view, the strategic deployment of concepts of addiction which has enabled the public health and criminal justice systems to be able to share governance over psychoactive substance use is likely to become destabilised by these discursive developments. In that policy in the United Kingdom and elsewhere now draws upon happiness research, while reformers advocate freedom of choice over means of enhancing our states of being, a new focus upon the rational evaluation of psychoactive substances governance seems plausible. (shrink)

Issues arising in connection with genes and nutrition policy include both nutrigenomics and nutrigenetics. Nutrigenomics considers the relationship between specifc nutrients or diet and gene expression and, it is envisaged, will facilitate prevention of diet-related common diseases. Nutrigenetics is concerned with the effects of individual genetic variation on response to diet, and in the longer term may lead to personalised dietary recommendations. It is important also to consider the surrounding context of other issues such as novel and functional foods in (...) so far as they are related to genetic modification. Ethical issues fall into a number of categories: why nutrigenomics? Will it have important public health benefits? questions about research, e.g. concerning the acquisition of information about individual genetic variation; questions about who has access to this information, and its possible misuse; the applications of this information in terms of public health policy, and the negotiation of the potential tension between the interests of the individual in relation to, for example, prevention of conditions such as obesity and allergy; the appropriate ethical approach to the issues, e.g. the moral difference, if any, between therapy and enhancement in relation to individualised diets; whether the 'technological fix' is always appropriate, especially in the wider context of the purported lack of public confidence in science, which has special resonance in the sphere of nutrition. (shrink)

The rapidly changing field of genetics affects society through advances in health-care and through implications of genetic research. This study addresses the impacts of new genetic discoveries and technologies on different segments of today's society. The book begins with a chapter on genetic complexity, and subsequent chapters discuss moral and ethical questions arising from today's genetics from the perspectives of health care professionals, the media, the general public, special interest groups and commercial interests.

Over two hundred years ago, Thomas Jefferson suggested the need for a broader legal curriculum. As the twenty-first century begins, the practice of law will increasingly demand interdisciplinary knowledge and collaboration — between those trained in law and a broad range of scientific and technical fields, including engineering, biology, genetics, ethics, and the social sciences. The practice of public health law provides a model for both the substantive integration of law with science, and for the way its (...) practitioners work. In addition, public health law also provides a model for interdisciphuy and integrative teaching. (shrink)

A new landscape of prenatal testing is presently developing, including new techniques for risk-reducing, non-invasive sampling of foetal DNA and drastically enhanced possibilities of what may be rapidly and precisely analysed, surrounded by a growing commercial genetic testing industry and a general trend of individualization in healthcare policies. This article applies a set of established ethical notions from past debates on PNT for analysing PNT screening-programmes in this new situation. While some basic challenges of PNT stay untouched, the new development (...) supports a radical individualization of how PNT screening is organized. This reformation is, at the same time, difficult to reconcile with responsible spending of resources in a publicly funded healthcare context. Thus, while the ethical imperative of individualization holds and applies to PNT, the new landscape of PNT provides reasons to start rolling back the type of mass-screening programmes currently established in many countries. Instead, more limited offers are suggested, based on considerations of severity of conditions and optimized to simultaneously serve reproductive autonomy and public health within an acceptable frame of priorities. The new landscape of PNT furthermore underscores the ethical importance of supporting and including people with disabilities. For the very same reason, no ban on what may be analysed using PNT in the new landscape should be applied, although private offers must, of course, conform to strict requirements of respecting reproductive autonomy and what that means in terms of counselling. (shrink)

Epidemiologists and geneticists claim that genetics has an increasing role to play in public health policies and programs in the future. Within this perspective, genetic testing and screening are instrumental in avoiding the birth of children with serious, costly or untreatable disorders. This paper discusses genetic testing and screening within the framework of eugenics in the health care context of India. Observations are based on literature review and empirical research using qualitative methods. I distinguish ‘private’ from (...) ‘public’ eugenics. I refer to the practice of prenatal diagnosis as an aspect of private eugenics, when the initiative to test comes from the pregnant woman herself. Public eugenics involves testing initiated by the state or medical profession through (more or less) obligatory testing programmes. To illustrate these concepts I discuss the management of thalassaemia, which I see as an example of private eugenics that is moving into the sphere of public eugenics. I then discuss the recently launched newborn screening programme as an example of public eugenics. I use Foucault’s concepts of power and governmentality to explore the thin line separating individual choice and overt or covert coercion, and between private and public eugenics. We can expect that the use of genetic testing technology will have serious and far-reaching implications for cultural perceptions regarding health and disease and women’s experience of pregnancy, besides creating new ethical dilemmas and new professional and parental responsibilities. Therefore, culturally sensitive health literacy programmes to empower the public and sensitise professionals need attention. (shrink)

This chapter analyzes the ‘hard sell’ of genetically engineered (GE) mosquitoes with gene drives as the solution to mosquito-borne diseases. A defining characteristic of the aggressive sell of the bio-technology is the ‘biologization’ of the significant prevalence of mosquito-borne diseases in certain socio-economically marginalized regions of the global South. Specifically, hard sell narratives either minimize or ignore the structural, systemic factors that are partially responsible for the public health problem that the GE mosquitoes are intended to bio-solve. The (...) biologization of a public health problem that disproportionately affects low-income, marginalized populations in certain global South regions has epistemic, epidemiological, and gendered ethico-political costs. The primary focus of this chapter is two scientific papers by researchers with ties to Target Malaria, a research organization developing GE mosquitoes with gene drives as the solution to malaria in the global South. In the interest of a contextualized analysis of the hard sell of GE mosquitoes with gene drives in those scientific papers, this chapter examines the normative commitments of Target Malaria’s key backer, the Bill and Melinda Gates Foundation, a powerful private organization that currently dominates the global health governance stage. (shrink)

Stigma has become an important concept in public health law. It is widely accepted that certain diseases are disfavored in society, leading to discrimination against people identified with them, which in turn has the tendency to drive an epidemic underground—i.e., to make it more difficult for voluntary public health programs to reach and succeed among populations bent on concealing their disease or risk status. The need to reduce stigma and its effects has been used to justify (...) the passage of privacy and antidiscrimination law to protect people with HIV. More recently, stigma has been part of the arsenal of justification for special genetic antidiscrimination and privacy law. Despite its importance, however, there is no single widely accepted definition of stigma in social science, and its relationship to law has been generally under-theorized and unsupported by data, reducing our ability to effectively deploy law and other tools in the anti-stigma cause. (shrink)

Genetic knowledge is a civil right and a civil obligation. New genetic knowledge in individual health risk prediction and prevention and new pharmacogenetic opportunities for developing more efficacious individualized drugs broaden human and civil rights for better health and health care. Public health policy has yet to develop and provide programs in genetic information and consultation together with other health risk information and health literacy education. Data availability and genetic knowledge will make citizens (...) more competent partners in health risk management. As with all information, abuse and manipulation of genetic information cannot be excluded; but health education as an essential part of public health services will empower citizens to better care for their own and their families health. Existing cultural and ethical principles, laws and regulations need to be reviewed and modified in order to prevent and fight illegal or immoral use of genetic information. The promotion of genetic knowledge allows for a new model of social contract as health care contract between citizens, health care experts, and society. (shrink)

The development and regulation of hormonal contraception has been problematic—with concerns and safety of patients often being disregarded. Better birth control prescribing may lie in genetic testing. Direct-to-consumer genetic testing aimed at "personalizing the pill" exists, but regulations and clinical guidelines must adapt to meet the diverse needs of patients. This article analyzes emerging socio-ethical-legal tensions as hormonal contraceptives enter the pharmacogenomic era. Using a narrative lens, the author concludes that further patient-centered research—grounded in the voices of distinct populations—should inform (...) policy so as to better serve birth control users and avoid the historical injustices with respect to hormonal contraception. (shrink)

The purpose of this study was to explore the views of members of the general public regarding ethical issues in adult predictive genetic testing. The literature pertaining to ethical issues regarding to adult predictive genetic testing is largely restricted to the views of ‘experts’ who have emphasized informed consent, patent issues, and insurance discrimination. Occasionally the views of patients who have undergone genetic counselling and testing have been elicited, adding psychosocial and family issues. However, the general public has (...) not had the opportunity to contribute. In order to explore theatre as a health policy research tool, 1,200 audience members attended the play ‘Sarah’s Daughters’ in seven Canadian cities, following which audience discussions were audiotaped. This study performed a secondary qualitative analysis of the data to identify the ethical issues of adult predictive genetic testing important to members of the general public. The identified issues were: (1) need for public education; (2) choice to undergo genetic counselling and testing; (3) access to genetic counselling and testing; and (4) obligations regarding the handling of genetic information. Audience members emphasized public education and access to information regarding potential choices, which was different from the emphasis on informed consent and other ethical issues prominent in the literature. Members of the general public emphasized ethical issues that were different than those identified by experts and patients. It is essential that members of the public be included in complex and controversial public policy decisions. (shrink)

As rapid advances in human genetic research are transferred into new areas of genetic technology, questions relatingto the use of these techniques will escalate. This paper examines some of the policy concerns surrounding recent developments in genetic screening. It discusses the impetus and implications of genetic screening in general, examines various applications, and analyzes the costs and benefits of screening programs currently in existence. Special emphasis is placed on whether or not screening should be considered a matter of public (...) health and mandated on those grounds. This paper argues against any compulsory screening programs except where the disease is easily identified, applicable across social groups, and treatable. While screening services for carriers of genetic disease and prenatal diagnosis should be made available and education programs should be expanded substantially, the burden of proof for involuntary programs is placed on the proponents. There is little public health justification at thb time for mandatory screening though this does not preclude future public health demands. It is argued that the goals and justification of various human genetic technologies must be examined at this time due to the rapid advancement of the research as well as the ultimate benefits promised for humankind. CiteULike Connotea Del.icio.us What's this? (shrink)

It is predicted that the rapid acquisition of new genetic knowledge and related applications during the next decade will have significant implications for virtually all members of society. Currently, most people get exposed to information about genes and genetics only through stories publicized in the media. We sought to understand how individuals in the general population used and understood the concepts of ???genetics??? and ???genes.??? During in-depth one-on-one telephone interviews with adults in the United States, we asked questions (...) exploring their basic understanding of these terms, as well as their belief as to the location of genes in the human body. A wide range of responses was received. Despite conversational familiarity with genetic terminology, many noted frustration or were hesitant when trying to answer these questions. In addition, some responses reflected a lack of understanding about basic genetic science that may have significant implications for broader public education measures in genetic literacy, genetic counseling, public health practices, and even routine health care. (shrink)

Current research on the human genome holds enormous long-term promise for improvements in health care, but it poses an immediate ethical challenge in the area of health insurance, by raising the question of whether insurers should be allowed to take genetic information about customers into account in the setting of premiums. It is widely held that such discrimination is immoral and ought to be illegal, and the prevalence of this view is understandable, given the widespread belief, which I (...) endorse, that every individual in a society as affluent as ours has a basic right to affordable health care. But prohibiting genetic discrimination in health insurance is not an effective way to protect this right. On the contrary, I argue that because of the nature of insurance as a product sold in a competitive market, such a prohibition is misguided, and its worthy aims must, instead, be pursued through reforms in our country’s system of publicly provided health care. (shrink)

The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the (...) country. Focus group participants voiced a strong desire to be able to access individual research results. Recognizing the wide range of possible research results from a large cohort study, they repeatedly and spontaneously suggested that cohort study participants be given ongoing choices as to which results they received. (shrink)

Effectively addressing ethical issues in precision medicine research in Africa requires a holistic social contract that integrates biomedical knowledge with local cultural values and Indigenous knowledge systems. Drawing on African epistemologies such as ubuntu and ujamaa and on our collective experiences in genomics and big data research for sickle cell disease, hearing impairment, and fragile X syndrome and the project Public Understanding of Big Data in Genomics Medicine in Africa, we envision a transformative shift in health research data (...) governance in Africa that could help create a sense of shared responsibility between all stakeholders in genomics and data‐driven health research in Africa. This shift includes proposing a social contract for genomics and data science in health research that is grounded in African communitarianism such as solidarity, shared decision‐making, and reciprocity. We make several recommendations for a social contract for genomics and data science in health, including the coproduction of genomics knowledge with study communities, power sharing between stakeholders, public education on the ethical and social implications of genetics and data science, benefit sharing, giving voice to data subjects through dynamic consent, and democratizing data access to allow wide access by all research stakeholders. Achieving this would require adopting participatory approaches to genomics and data governance. (shrink)

This book contains a collection of treaty documents and soft law on health care rights and health ethics which are used in health law training programs. Regional documents and explanatory reports on health care rights, which are derived from international human rights law, provide a way of "unwrapping" government obligations in health care, making rights more specific, accessible, and (judicially) accountable. In addition, soft law declarations and medical ethics contribute to understanding the moral meaning of (...) human rights in health care. As such, the principles and standards provide practical guidance for States when dealing with equal access to health care services, the rights of patients, biomedical research, organ donations and transplants, genetics, and public health. The book covers the basic documents, while general comments and explanatory reports amplify the principles embodied in the human rights treaties. The authoritative interpretations clarify a 'European approach' on a State's obligations concerning health care rights and ethics. (shrink)

This paper examines processes of translation through which molecular genetic technologies and practices are incorporated into environmental health research and regulation. Specifically, it considers how scientists, risk assessors, and regulators have used genetically modified mouse models to translate across scientific disciplines, articulate emergent molecular forms, standards, and practices with the extant? gold standard,? and establish roles for molecular knowledge in risk assessment and regulation. Noting variation both within and between regulatory agencies in responses to data from these models, the (...) article describes also the role of public-private networks and their effects on professional and institutional imperatives which shape regulators? responses to the potential applications of these models. The conclusions address the importance of translation for understanding the wider implications of the molecularization of environmental health science. (shrink)

Informed by a search of the literature about the usage of genetic testing information (GTI) by insurance companies, this paper presents a practical ethical analysis of several distinct public policy options that might be used to govern or constrain GTI usage by insurance providers. As medical research advances and the extension to the Human Genome Project (2016, https://en.wikipedia.org/wiki/human_genome_project_-_write) moves to its fullness over the next decade, such research efforts will allow the full synthesis of human DNA to be connected (...) to predictive health dispositions. As testing costs fall, there will be ever more pressure for citizens to disclose GTI. Genetic testing information is integral to future medical care because it can be used to better assess individually tailored medical therapies as well as to allow a more informed risk analysis by the insurance industry, which in some countries such as the USA underwrites a majority of citizen medical expenses. As discussed in this examination, the revelation of people’s uniquely personal GTI to insurers has enormous societal implications. The major contribution of the paper is to offer policy makers and concerned citizens a nuanced articulation of the basic options to regulate GTI, with a special consideration for ethical fairness and equity. As genetic-based medicine blossoms and pressures to reduce healthcare costs increase, there will be an ever greater impetus for countries to revisit their genetic testing policies. Organizations and policy makers striving to create GTI oversights perceived to be both “fair and effective” need to be aware of the ethical perspectives discussed in this paper. (shrink)

Like all community-based public health campaigns, proposals to use genetic information to improve the health and welfare of communities, whether the old eugenic sterilization campaigns or the routinized population screening programs of today's ‘public health genetics’, can involve asking affected individuals to make special sacrifices or assume special responsibilities on behalf of the community's welfare. Moreover, unlike public health interventions that restrict individual liberties in order to prevent health problems which all (...) community members risk more or less equally, genetic prevention strategies always require sacrifices on the part of the community who face the genetic risks in question on behalf of those who do not. The irony of ‘community genetics’ is that most human communities are much too heterogeneous to face universal gene pool disasters. (shrink)

Metaphors used to describe new technologies mediate public understanding of the innovations. Analyzing the linguistic, rhetorical, and affective aspects of these metaphors opens the range of issues available for bioethical scrutiny and increases public accountability. This article shows how such a multidisciplinary approach can be useful by looking at a set of texts about one issue, the use of a newly developed technique for genetic modification, CRISPRcas9.

In March 1986, a public symposium took place in Heidelberg about the “unresolved potential dangers of genetic engineering”. The event was organized by institutions affiliated with the environmental movement. Choosing this symposium as an example, the article shows how the public appearance of scientists can be understood as a form of political activism. The article shows how specialists from fields as diverse as biology, chemistry, physics, law and political sciences tried to place political messages by putting themselves in (...) the limelight as independent scientists. I argue that the symposium was both: a place of science communication intertwined with political agitation that, as should be noted, happened in a time when the West German government was working on the legislation of genetic engineering, legitimated by relying on independent expertise. It can be concluded that the discourse of scientific independence became a strategic tool in the controversial debate about the uses and dangers of genetic engineering. Thus, it draws attention to a dimension of political-scientific activity which cannot be fully grasped by the concept of ‘the expert’ that is established in the history of science. (shrink)

In the early 1970s, a World Health Organization‐initiated and United States‐funded project released lab‐reared mosquitoes outside New Delhi in the first large‐scale field trials of the genetic control of mosquitoes. Despite partnering with the Indian Council of Medical Research and investing significantly in outreach to local communities at the release sites, the project was embroiled in controversy and became an object of vehement debate within the Indian parliament and diplomatic contretemps between the United States and India. This early episode (...) of genetic control research demonstrates how a scientific collaboration was entangled in geopolitics and shaped by the legacy of colonialism. This historical case study has implications for public deliberation in the present, pointing to the challenges of shared decision‐making in the context of structural inequality, the way that a backdrop of military interest in a technology can impede trust, and the long‐term consequences of projects that foster mistrust. (shrink)

The rise of genetic techniques presents a great promise as well as some difficult dilemma's about how genetics will affect the way we will be able to live our lives. For this reason, in many countries, public debates are organized to reflect upon the development of predictive medicine. In this essay we focus on economist A. Hirschman's work on “exit, voice and loyalty” to analyse and enrich these public debates. We first introduce Hirschman's triad of concepts and (...) focus on the concept of “voice,” which refers to an institution's ability to allow clients to give feedback about products or services, and its ability to listen to the feedback given. We argue that voice is particularly important for the health care system in which predictive medicine is developing. Voice is crucial because how predictive medicine will become institutionalised is now in the process of becoming determined. However, in public debates about predictive medicine, voice tends to be reduced to providing people with the option of making a choice whether to use genetic techniques or not. We argue that this reduction of voice to choice is not very informative about predictive medicine and suggest an amendment of Hirschman's concept of voice, which we call “hesitant voice.” Hesitant voice attempts to be informative about the uncertainty people experience in addressing predictive medicine and topicalises the gradual, the embodied, the tentative character of voice in developing situations like that of predictive medicine. (shrink)

The issue of large-scale, population based DNA collections has become a world-wide discussion, which is hoped to bring substantial improvements in medicine. Continuous access to clinical data linked to the genetic samples is very important for some research that aims to find significant association between genes and diseases. This raises ethical issues related to privacy and confidentiality of medical records and the genetic information of the individuals who may be involved in the research. Genetic databases can also raise challenges for (...) the protection of the rights of the social groups, in avoiding potential stigmatization or discrimination. Informed consent of voluntary participants is another important issue in genetic research.We consider whether a person has ethical duties to donate a sample to a database if it will be used for the improvement of the health services to which they have benefited from. The balance between individual's privacy and public health is needed in genetic research. A good database will contribute to the good of both donors and society. (shrink)

Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genome – its common nature – has been underappreciated and underrepresented in the ethics literature and policy dialogue surrounding genetics and genomics. This article will argue that, just as the personal nature of (...) the genome has been used to reinforce individual rights and justify important privacy protections, so too the common nature of the genome can be employed to support protections of the genome at a population level and policies designed to promote the public's wellbeing. In order for public health officials to have the authority to develop genetics policies for the sake of the public good, the genome must have not only a common, but also a public, dimension. This article contends that DNA carries a public dimension through the use of two conceptual frameworks: the common heritage framework and the common resource framework. Both frameworks establish a public interest in the human genome, but the CH framework can be used to justify policies aimed at preserving and protecting the genome, while the CR framework can be employed to justify policies for utilizing the genome for the public benefit. A variety of possible policy implications are discussed, with special attention paid to the use of large-scale genomics databases for public health research. (shrink)