Effective July 22, 2011, a new law in the state of Washington requires any donor of sperm or eggs to provide a medical history and identifying information to fertility clinics. It also allows donor‐conceived individuals to request this information from clinics once they reach the age of eighteen. This is a significant legislative milestone and a promising development in a country that has consistently shied away from regulating the infertility industry in any way. What do we as a society owe (...) donor‐conceived individuals in terms of obtaining access to information about their genetic origins? This essay addresses just one of this set of issues: the regulatory changes required to address the medical interests of donor‐conceived individuals, regardless of whether a human right to know one's genetic origins is acknowledged. (shrink)

The ethical issues around decision making on behalf of infants have been illuminated by two empirical research studies carried out in Scotland. In-depth interviews with 176 medical and nursing staff and with 108 parents of babies for whom there was discussion of treatment withholding/withdrawal, generated a wealth of data on both the decision making process and the management of cases. Both staff and parents believe that parents should be involved in treatment limitation decisions on behalf of their babies. However, whilst (...) many doctors and nurses consider the ultimate responsibility too great for families to carry, the majority of parents wish to be the final arbiters. We offer explanations for the differences in perception found in the two groups. The results of these empirical studies provide both aids to ethical reflection and guidance for clinicians dealing with these vulnerable families. They demonstrate the value of empirical data in the philosophical debate. (shrink)

In this paper several reasons as to why framing issues should be of greater interest to both medical ethicists and healthcare professionals are suggested: firstly, framing can help in explaining health behaviours that can, from the medical perspective, appear perverse; secondly, framing provides a way of describing the internal structure of ethical arguments; and thirdly, an understanding of framing issues can help in identifying clinical practices, such as non-directive counselling, which may, inadvertently, be failing to meet their own stated ethical (...) aims. The effect of framing on how individuals interpret information and how healthcare choices are influenced by framing are described. Next, the role of framing in ethical discourse is discussed with specific reference to Judith Jarvis Thomson’s philosophical mind experiment about abortion and the violinist. Finally, the implications of this analysis are examined for the practice of non-directive counselling, which aims at communicating information in a neutral, value-free way and thereby protecting patient autonomy. (shrink)

The preventative paradigm of preconception care is receiving increasing attention, yet its boundaries remain vague in three respects: temporally; agentially; and instrumentally. Crucially, it remains unclear just who is to be considered a ‘potential parent’, how soon they should take up preconception responsibilities, and how weighty their responsibilities should be.

Over the years a number of countries have abolished anonymous gamete donation and shifted toward open-identity policies. Donor-conceived children are said to have a fundamental “right to know” the identity of their donor. In this article, we trace the arguments that underlie this claim and question its implications. We argue that, given the status attributed to the right to know one's gamete donor, it would be discriminatory not to extend this right to naturally conceived children with misattributed paternity. One way (...) to facilitate this would be through routine paternity testing at birth. While this proposal is likely to raise concerns about the conflicting interests and rights of other people involved, we show that similar concerns apply to the context of open-identity gamete donation. Unless one can identify a rational basis for treating the two groups differently, one's stance toward both cases should be the same. (shrink)

Parents who are facing decisions about life-sustaining treatment for their seriously ill or dying child are supported by their child's doctors and nurses. They also frequently seek other information sources to help them deal with the medical and ethical questions that arise. This might include written or web-based information. As part of a project involving the development of such a resource to support parents facing difficult decisions, some ethical questions emerged. Should this information be presented in a strictly neutral fashion? (...) Is it problematic if narratives, arguments or perspectives appear to favour stopping over continuing life-sustaining treatment? Similar questions might arise with written materials about decisions for adults, or for other ethically contentious decisions. This paper explores the meaning of ‘balance’ in information provision, focusing particularly on written information about life-sustaining treatment for children. We contrast the norm of non-directiveness in genetic counselling with the shared decision-making model often endorsed in end-of-life care. We review evidence that parents do not find neutrality from medical professionals helpful in discussions. We argue that balance in written information must be understood in the light of the aim of the document, the most common situation in which it will be used, and any existing biases. We conclude with four important strategies for ensuring that non-neutral information is nevertheless ethically appropriate. (shrink)

When the complete human genomehas been sequenced, everyone of us will becomea potential candidate for genetic counselingand testing. Within a short period of timeeveryone will obtain his personal geneticpassport identifying deleterious andsusceptibility genes. With the availability ofpresymptomatic tests for late-onset disordersand the possibilities of prevention andtreatment, the conflict between directivenessand non-directiveness will dominate thecounseling setting. Despite general consent onproviding genetic information in a nondirectivefashion to preserve value neutrality andenhance client's autonomy, there is no acceptedcommon definition of what non-directivenessreally is or (...) ought to be. The article tries toelaborate some aspects which might be fruitfuland clarifying in the complex issues involvedin the black box of genetic counseling. (shrink)