Getting a head start: the importance of personal genetics education in high schools

With advances in sequencing technology, widespread and affordable genome sequencing will soon be a reality. However, studies suggest that "genetic literacy" of the general public is inadequate to prepare our society for this unprecedented access to our genetic information. As the current generation of high school students will come of age in an era when personal genetic information is increasingly utilized in health care, it is of vital importance to ensure these students understand the genetic concepts necessary to make informed medical decisions. These concepts include not only basic scientific knowledge, but also considerations of the ethical, legal, and social issues that will arise in the age of personal genomics. In this article, we review the current state of genetics education, highlight issues that we believe need to be addressed in a comprehensive genetics education curriculum, and describe our education efforts at the Harvard Medical School-based Personal Genetics Education Project.     

Discrimination as a consequence of genetic testing.

Genetic discrimination refers to discrimination directed against an individual or family based solely on an apparent or perceived genetic variation from the "normal" human genotype. We describe here the results of a case history study designed to assess whether or not genetic discrimination exists. Using the above definition of genetic discrimination and applying stringent criteria for case selection, we find that genetic discrimination exists and is manifested in many social institutions, especially in the health and life insurance industries. Stigmatization, and denial of services or entitlements to individuals who have a genetic diagnosis but who are asymptomatic or who will never become significantly impaired, is noted. Follow-up comprehensive studies on the significance and varieties of genetic discrimination are needed. In order to avoid creating a new social underclass based on genetic discrimination (the "asymptomatic ill"), existing and future genetic testing or screening programs need review by medical, scientific, legal, and social policy experts, as well as the public, and may require modification.     

Medical education and society.

As health care changes under the pressures of restraint and constraint our vision of the future of medical education should be based on the medical school''s responsibility to the community. The medical school is "an academy in the community": as an academy, it fosters the highest standards in education and research; as an institution in the community, it seeks to improve public health and alleviate suffering. The author argues that to better achieve these goals medical schools need to become more responsible and responsive to the population they serve. Medical schools have been slow to accept fully the social contract by which, in return for their service to society, they enjoy special rights and benefits. This contract requires that medical educators listen to the public, talk honestly and constructively with government representatives and assess the needs and expectations of the community.     

Population biobanks and returning individual research results: mission impossible or new directions?

Historically, large-scale longitudinal genomic research studies have not returned individual research results to their participants, as these studies are not intended to find clinically significant information for individuals, but to produce ‘generalisable’ knowledge for future research. However, this stance is now changing. Commentators now argue that there is an ethical imperative to return clinically significant results and individuals are now expressing a desire to have them. This shift reflects societal changes, such as the rise of social networking and an increased desire to participate in medical decision-making, as well as a greater awareness of genetic information and the increasing ability of clinicians to use this information in health care treatment. This paper will discuss the changes that have prompted genomic research studies to reconsider their position and presents examples of projects that are actively engaged in returning individual research results.     

Ethical issues in human genome research.

In addition to provocative questions about science policy, research on the human genome will generate important ethical questions in at least three categories. First, the possibility of greatly increased genetic information about individuals and populations will require choices to be made about what that information should be and about who should control the generation and dissemination of genetic information. Presymptomatic testing, carrier screening, workplace genetic screening, and testing by insurance companies pose significant ethical problems. Second, the burgeoning ability to manipulate human genotypes and phenotypes raises a number of important ethical questions. Third, increasing knowledge about genetic contributions to ethically and politically significant traits and behaviors will challenge our self-understanding and social institutions.     

Spécificité des dilemmes éthiques résultant des travaux développés en neurosciences: émergence d’une neuroéthique

As neurosciences improve our knowledge about the brain for defining behaviour, medical ethics and social policy, what are the implications of new possibilities of technical intervention on our brain? Neuroethics defines a new field of ethics where scientists and ethicists, and also journalists and politicians, are beginning to reflect on social issues resulting from applications of the work of neuroscience in areas such as moral vision, decision-making, conduct and policies. It is likely that the potential application of new knowledge to human behaviour will generate a great deal of ethical and public policy concern in many aspects of everyday life, from child care and school programs to improvements or maintenance of adult capabilities. Neuroscience will also challenge social fields as diverse as forensic psychiatry, sports, corporate hiring and the judiciary. As neurosciences advance, it is important to have a framework that might help to guide the utilization of the new knowledge.     

上海市医疗机构基因临床研究与应用的现状分析

?????? 目的 分析上海市基因临床研究与应用中存在或可能存在的伦理问题。方法 对上海市22所医疗机构进行问卷调查,并对相关人员进行关键知情者访谈。结果 被调查的上海市医疗机构中有7所开展基因工作,2011年公立医院基因检测平均服务量比2009年增长1.75倍;31%的公立医院从事基因工作的人员在近一年内参加过伦理培训,体检机构未向员工提供伦理培训;3所开展基因检测的机构未要求签署知情同意书。结论 上海市基因临床研究与应用发展较快但应用不广,应进一步促进基因检测技术的临床应用,完善基因临床应用的伦理规范。     

Beyond consent: ethical and social issues in genetic testing

Informed consent is a vital ethical doctrine in clinical medicine and, through genetic counselling, is being applied to genetic testing. But genetic testing raises issues that transcend the traditional concept of informed consent. Genetic tests are adopted without demonstrable clinical benefit, and the consequences of testing can reach beyond the individual to their families and communities. Understanding the social and cultural context of genetic testing will lead to more informed discussion and debate on these issues.     

Ethical, legal, and social aspects of farm animal cloning in the 6th Framework Programme for Research

Cloned livestock have potential importance in the provision of improved medicine as well as in the development of livestock production. The public is, however, increasingly concerned about the social and ethical consequences of these advances in knowledge and techniques. There is unevenness throughout Europe in different Member States' attitudes to research into livestock cloning. Although there is EU legislation controlling the use of animals for research purposes, there is no legislation specifically governing cloning in livestock production. The main EU reference is the 9th Opinion of the European Group on Ethics, which states "Cloning of farm animals may prove to be of medical and agricultural as well as economic benefit. It is acceptable only when the aims and methods are ethically justified and when carried out under ethical conditions." The ethical justification includes the avoidance of suffering, the use of the 3Rs principle and a lack of better alternatives. The Commission addresses these issues in the 6th Framework Programme by promoting the integration of ethical, legal and social aspects in all proposals where they are relevant, by fostering ethical awareness and foresight in the proposals, by encouraging public dialogue, and by supporting specific actions to promote the debate. Research must respect fundamental ethical principles, including animal welfare requirements.     

Bioethics for clinicians: 14. Ethics and genetics in medicine

Information about a patient''s inherited risk of disease has important ethical and legal implications in clinical practice. Because genetic information is by nature highly personal yet familial, issues of confidentiality arise. Counselling and informed consent before testing are important in view of the social and psychological risks that accompany testing, the complexity of information surrounding testing, and the fact that effective interventions are often not available. Follow-up counselling is also important to help patients integrate test results into their lives and the lives of their relatives. Genetic counselling should be provided by practitioners who have up-to-date knowledge of the genetics of and the tests available for specific diseases, are aware of the social and psychological risks associated with testing, and are able to provide appropriate clinical follow-up. Some physicians may elect to refer patients for genetic counselling and testing. However, it is inevitable that all physicians will be involved in long-term follow-up both by monitoring for disease and by supporting the integration of genetic information into patients'' lives.     

Human genome research and the public interest: progress notes from an American science policy experiment.

This essay reviews the efforts of the U.S. Human Genome Project to anticipate and address the ethical, legal, and social implications of new advances in human genetics. Since 1990, approximately $10 million has been awarded by the National Institutes of Health and the Department of Energy, in support of 65 research, education, and public discussion projects. These projects address four major areas of need: (1) the need for both client-centered assessments of new genetic services and for improved knowledge of the psychosocial and ethnocultural factors that shape clients' clinical genetic experiences; (2) the need for clear professional policies regarding human-subject research, clinical practice standards, and public health goals in human genetics; (3) the need for social policy protection against unfair access to and use of personal genetic information; and (4) the need for improved public and professional understanding and discussion of these issues. The Human Genome Project's goal is to have defined, by 1995, policy options and programs capable of addressing these needs.     

Genetic discrimination in insurance and employment

The results of the Human Genome project will eventually have a great impact on medicine. However, the expansion of genetic testing due to these results exacerbates ethical, legal, and economic problems related to the project even today. Virtually free access to the data of testing would present an encroachment on personal freedom, since it may lead to discrimination based on genetic characteristics, i.e., genetic discrimination. Examples of this discrimination are already known; they include unsubstantiated refusals to employ carriers of certain alleles and denials of life or health insurance coverage and the ability to adopt a child. The use of genetic information in the insurance and employment fields is of primary concern due to its economic importance. Consumers consider genetic discrimination in these areas to be intolerable moral and social injustice. Genetic discrimination may eventually lead to the formation of a class of people who cannot buy an insurance policy, and, in the employment field, rejection of persons with "undesirable" genes infringes on citizens' rights to equal opportunity. However, selection for genetic characteristics in employment is justified if these characteristics determine sensitivity to occupational hazards.     

Great Expectations: Teaching Ethics to Medical Students in South Africa

Many academic philosophers and ethicists are appointed to teach ethics to medical students. We explore exactly what this task entails. In South Africa the Health Professions Council's curriculum for training medical practitioners requires not only that students be taught to apply ethical theory to issues and be made aware of the legal and regulatory requirements of their profession, it also expects moral formation and the inculcation of professional virtue in students. We explore whether such expectations are reasonable. We defend the claim that physicians ought to be persons of virtuous character, on the grounds of the social contract between society and the profession. We further argue that since the expectations of virtue of health care professionals are reasonable, it is also sound reasoning to expect ethics teachers to try to inculcate such virtues in their students, so far as this is possible. Furthermore, this requires of such teachers that they be suitable role models of ethical practice and virtue, themselves. We claim that this applies to ethics teachers who are themselves not members of the medical profession, too, even though they are not bound by the same social contract as doctors. We conclude that those who accept employment as teachers of ethics to medical students, where as part of their contractual obligation they are expected to inculcate moral values in their students, ought to be prepared to accept their responsibility to be professionally ethical, themselves.     

"Be ready against cancer, now": direct-to-consumer advertising for genetic testing

A recent addition to the debate about the benefits and harms of direct-to-consumer (DTC) advertising of medicines and pharmaceuticals is a growing critique of DTC marketing and sale of genetic tests. Academic and policy literatures exploring this issue have, however, tended to focus on the sale of genetic tests, paying rather less attention to the particular implications of advertising. The globalization of broadcast media and ever increasing access to the Internet mean that public exposure to advertising for medical technologies is a reality that national regulatory bodies will be hard pressed to constrain. Working through a case study detailing Myriad Genetics' 2002 pilot advertising campaign for their BRACAnalysis genetic susceptibility test for hereditary breast and ovarian cancer, this paper highlights some of the diverse and often overlooked and unregulated approaches to DTC advertising, and the associated social, ethical and policy implications.     

Genetic information and insurance: some ethical issues.

Life is risky, and insurance provides one of the best developed ways of controlling risks. By pooling, and so transferring risks, those who turn out to suffer antecedently uncertain harms can be assured in advance that they will be helped if those harms arise; they can then plan their lives and activities with confidence that they are less at the mercy of ill fortune. Both publicly organized and commercial insurance can organize the pooling of risk in ways that are beneficial for all concerned. They provide standard ways of securing fundamental ethical values such as solidarity and mutuality. Although policy holders do not know or contract with one another, each benefits from the contribution of others to a shared scheme for pooling and so controlling risk. Although there is a limit to the degree to which commercially-based insurance, where premiums depend on risk level, can go beyond mutuality towards solidarity, in practice it too often achieves a measure of solidarity by taking a broad brush approach to pooling risk. However, the ordinary practices of insurance, and in particular of commercial insurance, also raise ethical questions. These may be put in simple terms by contrasting the way in which an insurance market discriminates between different people, on the basis of characteristics that (supposedly) determine their risk level, and our frequent abhorrence of discrimination, in particular on the basis on religious, racial and gender characteristics. Are the discriminations on which insurance practice relies upon as standard acceptable or not? The increasing availability of genetic information, which testing (of individuals) and screening (of populations) may provide, could lend urgency to these questions. Genetic information may provide a way of obtaining more accurate assessment of individual risks to health and life. This information could be used to discriminate more finely between the risk levels of different individuals, and then to alter the availability and the costs of health, life and unemployment insurance to them. Since all of these forms of insurance bear very directly on the way most people live, it will matter to them how (if at all) insurers take account of genetic information. Will use of this information improve or damage the capacity of insurance to provide confidence in the face of uncertain harms, and help if they happen? Will it discriminate in acceptable or in unacceptable ways? Will it support or damage the sorts of mutuality and solidarity various sorts of insurance schemes have successfully institutionalized?     

Susceptibility genes and the question of embodied identity

Drawing on an assumption of the co-construction of the material and the social, late-onset Alzheimer's disease (AD) is used as an illustrative example to assess claims for an emergent figure of the "individual genetically at risk." Current medical understanding of the genetics of AD is discussed, followed by a summary of media and AD society materials that reveal an absence of gene hype in connection with this disease. Excerpts from interviews with first-degree relatives of patients diagnosed with AD follow. Interviewees hold complex theories of causation. After genetic testing they exhibit few if any subjective changes in embodied identity or lifestyle. Family history is regarded by interviewees as a better indicator of future disease than is genetic testing. We argue that, even when molecular genetics are better understood, predictions about complex disease based on genotyping will be fraught with uncertainty, making problematic the concept of individuals as genetically at risk when applied to late-onset complex disease.     

Toxin or medicine? Explanatory models of radon in Montana health mines

Environmental protection and public health agencies in the United States and elsewhere label radioactive radon gas a toxic environmental hazard and a major cause of lung cancer. Paradoxically, in Europe and Japan radon gas is also used as an analgesic and anti-inflammatory, as one choice in the spectrum of conventional medical care. Although it is possible to find radon therapy in the United States, it exists only as an unconventional practice in Montana "radon health mines." In this article, I examine the use of radon therapy by Americans despite intensive public health education media campaigns. Using the notion of explanatory models as an analytical framework, I argue that American health mine clients adjust or replace "toxic models" of radon with new kinds of explanatory models that allow radon to be redefined as a healing substance. The manner of this adjustment varies according to peoples' individual needs, their own preexisting cultural models and experiences, and their individual personalities; the source of authoritative knowledge accepted by each person is a strong influence. Through these altered explanatory models, mine clients are able to view their use of radon therapy as a rational course of action.     

Ethics and severe pandemic influenza: maintaining essential functions through a fair and considered response

The response to severe pandemic influenza will be managed by experts in public health and infectious disease and by government officials to whom the public will turn for information and direction. Nonetheless, there remain important ethical considerations that can shape what goals are given priority, how scarce resources are distributed, how the public is included, and how we treat the most vulnerable in our response to a pandemic. This article assumes that the secondary consequences of severe pandemic influenza could be greater than deaths and illness from influenza itself. Response plans, then, must consider threats to societal as well as medical infrastructures. While some have suggested that scarce medical countermeasures be allocated primarily to first responders and then to the sickest, we suggest that an ethical public health response should set priorities based on essential functions. An ethical response also will engage the public, will coordinate interdependent sectors as a core preparedness priority, and will address how plans affect and can be understood by the least well off.     

Challenges Faced by Behavioral Genetic Studies: Researchers Perspective from the MENA Region

BackgroundBehavioral genetic studies are important for the understanding of the contribution of genetic variations to human behavior. However, such studies might be associated with some ethical concerns.MethodsIn the current study, ethical challenges related to studies of genetic variations contributing to human behavior were examined among researchers. To achieve the study purpose, the Middle East and North Africa (MENA) region researchers were taken as an example, where the after- mentioned ethical challenges were discussed among a group of researchers, who were the participants of an online forum. Discussions and responses of the participants were monitored and were later qualitatively analyzed.ResultsDiscussions revealed that several ethical challenges, including subjects’ recruitment, the difficulty of obtaining informed consents, and issues of privacy and confidentiality of obtained data as information leakage, in this case, will lead to social stigma and isolation of the participants and their immediate family members. Jordanian social and cultural norms, faith, and the tribal nature of the population were raised as a major challenge that might face conducting behavioral genetic studies in the Arab populations of the MENA. The lack of regulation related to the conduction of genetic studies, misunderstanding, and misuse of genetic information are other challenges. A full explanation of genetic research and the current and future possible benefits/risks of such research could be potential solutions.ConclusionIn conclusion, the MENA populations are tackled with major challenges in relation to conducting research studies in genetics/antisocial behavior field/s. Establishment of guidelines related to genetic studies, capacity building, increasing public awareness about the importance of genetic testing, and enhancing responsible conduct of research will facilitate the conduct of such sensitive studies in the future in the region.     

Knowledge Levels and Training Needs of Disaster Medicine among Health Professionals,Medical Students,and Local Residents in Shanghai,China

Background

Disaster is a serious public health issue. Health professionals and community residents are main players in disaster responses but their knowledge levels of disaster medicine are not readily available. This study aimed to evaluate knowledge levels and training needs of disaster medicine among potential disaster responders and presented a necessity to popularize disaster medicine education.

Methods

A self-reporting questionnaire survey on knowledge level and training needs of disaster medicine was conducted in Shanghai, China, in 2012. A total of randomly selected 547 health professionals, 456 medical students, and 1,526 local residents provided intact information. The total response rate was 93.7%.

Results

Overall, 1.3% of these participants have received systematic disaster medicine training. News media (87.1%) was the most common channel to acquire disaster medicine knowledge. Although health professionals were more knowledgeable than community residents, their knowledge structure of disaster medicine was not intact. Medical teachers were more knowledgeable than medical practitioners and health administrators (p = 0.002). Clinicians performed better than public health physicians (p<0.001), whereas public health students performed better than clinical medical students (p<0.001). In community residents, education background significantly affected the knowledge level on disaster medicine (p<0.001). Training needs of disaster medicine were generally high among the surveyed. ‘Lecture’ and ‘practical training’ were preferred teaching methods. The selected key and interested contents on disaster medicine training were similar between health professionals and medical students, while the priorities chosen by local residents were quite different from health professionals and medical students (p<0.001).

Conclusions

Traditional clinical-oriented medical education might lead to a huge gap between the knowledge level on disaster medicine and the current needs of disaster preparedness. Continuing medical education and public education plans on disaster medicine via media should be practice-oriented, and selectively applied to different populations and take the knowledge levels and training needs into consideration.