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Results for “Genetic Privacy”

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PubMed2004

Predictive genetic testing in young people: when is it appropriate?

Predictive genetic testing is currently offered to adults for a range of conditions, even when there is no possibility of prophylaxis or treatment. However, similar testing in children and adolescents is advised against in international guidelines. Despite this, several authors have argued against the existing guidelines. Given the lack of empirical evidence, it is important that clinicians are aware not only of the guidelines, but also of the arguments in favour of such testing.

Adolescent↗
PubMed1996

Community and justice: the challenges of bicultural partnership to policy on assisted reproductive technology.

Listening to other cultures offers challenges to our fundamental assumptions and worldviews. In New Zealand public policy on Assisted Reproductive Technology (ART) is being worked out in a society committed to the development of bicultural partnership honouring the Treaty of Waitangi, a treaty with the indigenous people. Strong claims to the cultural significance of genetic heritage by Maori have made apparent to non-Maori (Pakeha) their own assumptions. These claims also resist reductive understandings of genetics. In this paper I review, as a Pakeha ethicist, initiatives taken in New Zealand, and the impact of bicultural development on public policy on ART. I also discuss some of the issues this raises for western bioethics as it relates to non-western approaches and include reference to the significance of genetic heritage as it is affecting guidelines for donor insemination and surrogacy.

Advisory Committees↗
PubMed2004

Coding and consent: moral challenges of the database project in Iceland.

A major moral problem in relation to the deCODE genetics database project in Iceland is that the heavy emphasis placed on technical security of healthcare information has precluded discussion about the issue of consent for participation in the database. On the other hand, critics who have emphasised the issue of consent have most often demanded that informed consent for participation in research be obtained. While I think that individual consent is of major significance, I argue that this demand for informed consent is neither suitable nor desirable in this case. I distinguish between three aspects of the database and show that different types of consent are appropriate for each. In particular, I describe the idea of a written authorisation based on general information about the database as an alternative to informed consent and presumed consent in database research.

Databases, Factual↗
PubMed2004

Pharmacogenetic testing, informed consent and the problem of secondary information.

Numerous benefits for patients have been predicted if prescribing decisions were routinely accompanied by pharmacogenetic testing. So far, little attention has been paid to the possibility that the routine application of this new technology could result in considerable harm to patients. This article emphasises that pharmacogenetic testing shares both the opportunities and the pitfalls with 'conventional' disease-genetic testing. It demonstrates that performing pharmacogenetic tests as well as interpreting the results are extraordinarily complex issues requiring a high level of expertise. It further argues that pharmacogenetic testing can have a huge impact on clinical decisions and may influence the therapeutic strategy as well as the clinical monitoring of a patient. This view challenges the predominant paradigm that pharmacogenetic testing will predict patients' responses to medicines, but that it will not provide any other significant disease-specific predictive information about the patient or family members. The article also questions published proposals to reduce the consent procedure for pharmacogenetic testing to a simple statement that the physician wishes to test a sample of the patient's DNA to see if a drug will be safe or whether it will work, and presents an alternative model that is better suited to protect patient's interests and to obtain meaningful informed consent. The paper concludes by outlining conditions for the application of pharmacogenetic testing in clinical practice in a way that can make full use of its potential benefits while minimising possible harm to patients and their families.

Drug Therapy↗
PubMed2004

Ethical implications of pharmacogenetics--do slippery slope arguments matter?

Pharmacogenetics is a rapidly expanding area of research exploring the relationship between inter-individual genetic variation and drug response, with the goal of developing genetically optimised therapies. Slippery slope arguments claim that a particular action should be rejected (or supported) because it might be the first step onto a slippery slope leading to undesirable (or desirable) consequences. In this article, several slippery slope arguments relevant to the context of pharmacogenetics are evaluated under consideration of underlying reasons for their popularity. The author concludes that although the examined arguments are unconvincing as slippery slope arguments, they do matter in this context. While positive slippery slope arguments serve as a driving force to fuel the development of pharmacogenetics, their negative counterparts play an important role to sensitise policy makers and the public to potential problems.

Databases, Genetic↗
PubMed2005

To know or not to know? Genetic ignorance, autonomy and paternalism.

This paper examines some arguments which deny the existence of an individual right to remain ignorant about genetic information relating to oneself--often referred to as 'a right to genetic ignorance' or, more generically, as 'a right not to know'. Such arguments fall broadly into two categories: 1) those which accept that individuals have a right to remain ignorant in self-regarding matters, but deny that this right can be extended to genetic ignorance, since such ignorance may be harmful to others, particularly those to whom one is genetically related (the 'harm to others objection') and 2) those which contend that, even if genetic ignorance is only self harming, it is not something to which individuals can rationally or morally claim to have a 'right' at all, since they defend their claims on autonomy-respecting grounds and ignorance is inimical to autonomy (the 'incoherence objection'). I argue that defenders of a right not to know have some plausible responses to the 'harm to others objection', they and their opponents reach an impasse in which both sides are left voicing concerns about the paternalistic implications of the other's point of view. I conclude that defenders of a right not to know would, therefore, advance their position further by analysing it in terms of values other than those of autonomy and rights.

Directive Counseling↗
PubMed2006

Returning genetic research results to individuals: points-to-consider.

This paper is intended to stimulate debate amongst stakeholders in the international research community on the topic of returning individual genetic research results to study participants. Pharmacogenetics and disease genetics studies are becoming increasingly prevalent, leading to a growing body of information on genetic associations for drug responsiveness and disease susceptibility with the potential to improve health care. Much of these data are presently characterized as exploratory (non-validated or hypothesis-generating). There is, however, a trend for research participants to be permitted access to their personal data if they so choose. Researchers, sponsors, patient advocacy groups, ethics committees and regulatory authorities are consequently confronting the issue of whether, and how, study participants might receive their individual results. Noted international ethico-legal guidelines and public policy positions in Europe and the United States are reviewed for background. The authors offer 'Points-to-Consider' regarding returning results in the context of drug development trials based on their knowledge and experience. Theses considerations include: the clinical relevance of data, laboratory qualifications, informed consent procedures, confidentiality of medical information and the competency of persons providing results to participants. The discussion is framed as a benefit-to-risk assessment to balance the potential positive versus negative consequences to participants, while maintaining the integrity and feasibility of conducting genetic research studies.

Access to Information↗
PubMed2006

What is genetic information, and why is it significant? A contextual, contrastive, approach.

Is genetic information of special ethical significance? Does it require special regulation? There is considerable contemporary debate about this question (the 'genetic exceptionalism' debate). 'Genetic information' is an ambiguous term and, as an aid to avoiding conflation in the genetic exceptionalism debate, a detailed account is given of just how and why 'genetic information' is ambiguous. Whilst ambiguity is a ubiquitous problem of communication, it is suggested that 'genetic information' is ambiguous in a particular way, one that gives rise to the problem of 'significance creep' (i.e., where claims about the significance of certain kinds of genetic information in one context influence our thinking about the significance of other kinds of genetic information in other contexts). A contextual and contrastive methodology is proposed: evaluating the significance of genetic information requires us to be sensitive to the polysemy of 'genetic information' across contexts and then examine the contrast in significance (if any) of genetic, as opposed to nongenetic, information within contexts. This, in turn, suggests that a proper solution to the regulatory question requires us to pay more attention to how and why information, and its acquisition, possession and use, come to be of ethical significance.

Communication↗
PubMedDate not supplied

Ethical dimensions in genetic screening: a look into the future.

The ethical dimensions of four areas of genetic screening, prenatal screening and diagnosis, newborn screening, carrier detection, and presymptomatic genetic testing, are discussed. Ethical analysis of genetic technologies focuses on the goals, values, and professional obligations that underlie the development and use of these technologies. We live in a complex, diverse society, in which there are multiple, often contradictory, values and belief systems that influence public and personal views about the morality of genetic technologies. Some of these prevailing views are presented to highlight the ethical issues nurses may encounter in reproductive health care, an area in which genetic information and services are increasingly important aspects of care.

Civil Rights↗
PubMed1997

Cancer genetic susceptibility testing: ethical and policy implications for future research and clinical practice. Cancer Genetic Studies Consortium, National Institutes of Health.

Authors examine the ethical and health policy implications in the Cancer Genetic Studies Consortium projects, which attempt to collect data on the clinical benefits and harms of cancer genetic testing. They suggest that more data are needed on the long-term physical and psychosocial effects of testing and that further examination is needed of the ethical issues raised by testing.

Adult↗
PubMed1998

Genetic discrimination in the workplace.

Author argues that the Americans with Disabilities Act prohibits discrimination against workers based on their genetic makeup. He also examines state legislation and recently proposed federal legislation prohibiting genetic discrimination.

Civil Rights↗
PubMed1998

Reconsidering genetic antidiscrimination legislation.

In response to the awareness that genetic discrimination is a significant problem, many states have passed or are passing legislation regulating the use of genetic information. Authors discuss the weaknesses as well as the strengths of such legislation, and recommend that the laws be redrafted to prohibit discrimination on the basis of any type of predictive medical information.

Civil Rights↗