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B M Knoppers

Publications and source records attributed to B M Knoppers.

At least 19 recordsLinked to original sources
PubMed2004

Strategies for consulting with the community: the cases of four large-scale genetic databases.

Large-scale genetic databases are being developed in several countries around the world. However, these databases depend on public participation and acquiescence. In the past, information campaigns have been waged and little attention has been paid to dialogue. Nowadays, it is important to include the public in the development of scientific research and to encourage a free, open and useful dialogue among those involved. This paper is a review of community consultation strategies as part of four proposed large-scale genetic databases in Iceland, Estonia, United Kingdom and Quebec. The Iceland Health Sector Database and Estonian Genome Project have followed a "communication approach" in order to address public concerns, whereas, UK Biobank and Quebec CARTaGENE have chosen a "partnership approach" to involve the public in decision-making processes. Following a comparison of community consultation strategies, the main concerns of the public are examined as well as the challenges of involving communities. Importantly, reported across all groups is the concern for confidentiality, respect of the individual, transparency, and the donor's right to access to their own result. However, even if researchers demonstrate a willingness to respect values such as fair representation, transparency and accountability, there is still a risk that the public will mistrust researchers and simply will not participate in sufficient numbers. Complications may arise when individual and community interests conflicts. The implementation of a partnership approach is definitely involving and costly; however, if used properly, this method can improve both participation and so database development.

Community Participation↗
PubMed2003

Genetic technologies, health care policy and the patent bargain.

The idea of granting patents on human genetic material continues to cause controversy. The debate is largely focussed on the moral acceptability of human gene patents, the impact of gene patents on the research environment and the value of patents to stimulate innovation and the commercialization and dissemination of genetic discoveries. As highlighted by a recent controversy in Canada, patents can also have a profound effect on health policy and access to genetic services. Creative and bold patent reform initiatives are necessary to ensure that society will, to the highest degree possible, reap the health care benefits of the genetic revolution.

Canada↗
PubMed2002

Physicians and genetic malpractice.

Primary care physicians are unprepared for the increase in demands for prenatal genetic testing. Often, they do not possess the necessary knowledge, skills or attitudes to provide genetic counselling. Yet, since the demand for prenatal genetic services is growing faster than the number of genetic professionals, the responsibility of genetic counselling will fall to these physicians. Physicians who lack genetic literacy may find themselves the targets of lawsuits for wrongful birth and wrongful life. Wrongful birth and wrongful life claims (in the context of genetics) both assert that but for the physician's negligence, the handicapped child would not have been born. Such medical malpractice suits against physicians exist in the United States, the United Kingdom, Canada and Australia. This paper discusses the case law on wrongful birth/life cases in these four countries. The authors conclude that as the number and availability of prenatal genetic tests increases, so too will the number of genetic malpractice claims, unless the education of physicians and medical students in genetics is promoted, possibly with the Internet as the new educational paradigm.

Australia↗
PubMed2001

Cancer genetics: a model for multifactorial conditions?

Research in the area of genetic susceptibility and cancer is beginning to challenge traditional socio-ethical and legal norms. In particular, increased personal data protection legislation is severely constraining the ability to maintain or initiate new cancer registries for proper epidemiological purposes. Likewise, the principle and obligation of the confidentiality of genetic information cannot remain sacrosanct in the face of the immediate health needs of biological relatives. Finally, participation in research and even the willingness to be tested and treated is constantly threatened by the uncertainty surrounding insurability. What are the new ethical parameters emerging in research in cancer genetics?

Confidentiality↗
PubMed2000

Ethical guideposts for allelic variation databases.

Basically, a mutation database (MDB) is a repository where allelic variations are described and assigned within a specific gene locus. The purposes of an MDB may vary greatly and have different content and structure. The curator of an electronic and computer-based MDB will provide expert feedback (clinical and research). This requires ethical guideposts. Going to direct on-line public access for the content of an MDB or to interactive communication also raises other considerations. Currently, HUGO's MDI (Mutation Database Initiative) is the only integrated effort supporting and guiding the coordinated deployment of MDBs devoted to genetic diversity. Thus, HUGO's ethical "Statements" are applicable. Among the ethical principles, the obligation of preserving the confidentiality of information transferred by a collaborator to the curator is particularly important. Thus, anonymization of such data prior to transmission is essential. The 1997 Universal Declaration on the Human Genome and Human Rights of UNESCO addresses the participation of vulnerable persons. Researchers in charge of MDBs should ensure that information received on the testing of children or incompetent adults is subject to ethical review and approval in the country of origin. Caution should be taken against the involuntary consequences of public disclosure of results without complete explanation. Clear and enforceable regulations must be developed to protect the public against misuse of genetic databanks. Interaction with a databank could be seen as creating a "virtual" physician-patient relationship. However, interactive public MDBs should not give medical advice. We have identified new social ethical principles to govern different levels of complexity of genetic information. They are: reciprocity, mutuality, solidarity, and universality. Finally, precaution and prudence at this early stage of the MDI may not only avoid ethically inextricable conundrums but also provide for the respect for the rights and interests of all those involved.

Adult↗
PubMed2000

Genetics and Society Project.

Faced with rapid advances in human genetics, policy makers are struggling to come to grips with a host of complex ethical, legal and social questions. The HUMGEN website gives policy makers and the public access to legislation, policy, guidelines and recommendations of government and nongovernmental organizations worldwide.

Databases, Factual↗
PubMed2000

Population genetics and benefit sharing.

The majority of international or national guidelines, specific to human genetics concentrate on actual or potential clinical applications. In contrast, the Ethics Committee of the Human Genome Organisation (HUGO) attempts to provide guidance to the bench scientists engaged in fundamental research in genomics prior to any clinical applications. Often confused as constituting the Human Genome Project (HGP) itself, HUGO's (Human Genome Organization) ultimate goal is to assist in the worldwide collaboration underpinning the HGP. It is an international organisation with 1,229 members in approximately 60 countries. The Ethics Committee is one of HUGO's six international advisory committees. Composed of experts from a number of countries and disciplines, the HUGO Ethics Committee promotes discussion and understanding of social, legal, and ethical issues as they relate to the conduct of, and knowledge derived from, the Genome Initiative. Currently, it has 13 members from 11 difference countries. It has produced statements on the conduct of genetic research, on cloning, and, has most recently presented a 'Statement on Benefit-Sharing', April 11, 2000. The Intellectual Property Committee of HUGO has been active in the controversial area of patenting. The issue of benefit-sharing is one that has its source in the mandate of both committees. How to avoid both commodification of the person through payment for access to DNA and biopiracy with no return to benefits to the families or community? While patents are a legitimate form of recognition for innovation, there seems to be no therapeutic exception to some of its stringent rules and the 'morality' exclusion has lain dormant. The HUGO 'Statement on Benefit-Sharing' examines the issues of defining community, common heritage, distributive justice and solidarity before arriving at its conclusions in benefit-sharing. This communication reviews some of these issues.

Genetics, Population↗
PubMed2000

Reflections: the challenge of biotechnology and public policy.

Rapid developments in the area of biotechnology within the next decade are likely to have a significant impact on Canadian society. This article outlines the practical and ethical issues that will need to be addressed in the face of scientific advances, and contemplates the development of an appropriate policy framework in this regard. Surveying the approaches to policy development taken thus far, the author notes the underlying need for greater transparency and public participation. Rational and effective policies will only result from additional basic scientific data being made available to a more informed and engaged Canadian public.

Animals↗
PubMed1999

Status, sale and patenting of human genetic material: an international survey.

Following a decade of debate, the European Directive on the Legal Protection of Biotechnological Inventions was adopted by the European Parliament and the Council of the European Union on July 6, 1998. The Directive constitutes a legal and social policy landmark in biotechnology, taking an explicit position on the contentious issue of the patentability of higher life forms. It fails, however, to provide definitive statements on the legal status of human genetic material or the possibility of personal financial gain in relation to such material. An overview of the international, regional and national positions (as found in laws and official policy statements) on the status, commodification and patentability of human genetic material indicates that, although the Directive represents a consolidation of opinions, many issues remain unresolved.

Commerce↗
PubMed1998

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.

Canada↗