An Ravelingien

The right to know your genetic parents: from open-identity gamete donation to routine paternity testing

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 ones 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, ones stance toward both cases should be the same.

Proceeding with clinical trials of animal to human organ transplantation: a way out of the dilemma

The transplantation of porcine organs to humans could in the future be a solution to the worldwide organ shortage, but is to date still highly experimental. Further research on the potential effects of crossing the species barrier is essential before clinical application is acceptable. However, many crucial questions on efficacy and safety will ultimately only be answered by well designed and controlled solid organ xenotransplantation trials on humans. This paper is concerned with the question under which conditions, given the risks involved and the ethical issues raised, such clinical trials should be resumed. An alternative means of overcoming the safety and ethical issues is suggested: willed body donation for scientific research in the case of permanent vegetative status. This paper argues that conducting trials on such bodies with prior consent is preferable to the use of human subjects without lack of brain function.

Open-Identity Sperm Donation: How Does Offering Donor-Identifying Information Relate to Donor-Conceived Offspring’s Wishes and Needs?

Over the past years, a growing number of countries have legislated open-identity donation, in which donor-conceived offspring are given access to the donor’s identity once the child has reached maturity. It is held that donor anonymity creates identity problems for such children similar to the “genealogical bewilderment” described within the adoption context. The study of the social and psychological effects of open-identity donation is still very much in its infancy, but what has been left unquestioned is whether (and to what extent) offering access to the donor’s name and address is an adequate response to such effects. This study has two goals: First, we aim to provide a systematic review of the reasons why donor-conceived (DC) offspring want to know the identity of their sperm donor. Second, we examine to what extent the provision of donor-identifying information can satisfy the reasons mentioned. The most important motivations appear to be: (1) to avoid medical risks and consanguineous relationships; (2) to satisfy curiosity; (3) to learn more about the self or to complete one’s identity; (4) to learn more about what kind of person the donor is (biographical information, why he donated, etc.); (5) to form a relationship with the donor and/or his family; and (6) to learn about one’s ancestry/genealogy. Our analysis shows that for nearly all of these reasons access to the donor’s identity is not necessary. In those cases where it is, moreover, donor identification is not sufficient. What is really needed is (extended) contact with the donor, rather than the mere provision of his name.

Lesbian couples' views about and experiences of not being able to choose their sperm donor

In this qualitative study, we explore how lesbian recipients view and experience the selection of their anonymous sperm donor. The study was conducted in Belgium, where fertility centres follow a legal protocol that severely restricts personal choice in donor selection. While previous studies have shown that recipients want greater control and input in the selection of their sperm donor, this was not a main concern for most women in the present study. They generally acknowledged their lack of control on the selection outcome and accepted this as part and parcel of an anonymous donation policy that provides an opportunity to have a child. They actively and passively downplayed initial concerns about the donor selection procedure and felt they did not have or need a right to further control over the donor selection. In adopting this ‘subordinate’ position, they felt they should trust the hospital, which they hoped would fulfil rather high screening standards. Those who did want more choice were nuanced and careful about their motivations: they focused on selecting traits that would facilitate normal child development or increase family coherence. The findings shed light on how these patients perceive their position in this third-party reproduction setting.

Sleep better than medicine? Ethical issues related to “wake enhancement”

This paper deals with new pharmacological and technological developments in the manipulation and curtailment of our sleep needs. While humans have used various methods throughout history to lengthen diurnal wakefulness, recent advances have been achieved in manipulating the architecture of the brain states involved in sleep. The progress suggests that we will gradually become able to drastically manipulate our natural sleep-wake cycle. Our goal here is to promote discussion on the desirability and acceptability of enhancing our control over biological sleep, by illustrating various potential attendant ethical problems. We draw attention to the risks involved, possible conflicts of interests underlying the development of wake enhancement, and the potential impact on accountability for fatigue related errors.

Use of pigs for xenotransplantation: the speciesism by proxy syndrome

Abstract:  Background:  When questioning whether it is acceptable to use pigs as sources of xenografts, focus easily shifts to demonstrations that it is more acceptable to exploit pigs rather than primates. Both practical and ethical reasons against the use of primates do not stand when applied to the use of pigs. Consequently, use of pigs is held to be justified.

Donor Conception Disclosure: Directive or Non-Directive Counselling?

It is widely agreed among health professionals that couples using donor insemination should be offered counselling on the topic of donor conception disclosure. However, it is clear from the literature that there has long been a lack of agreement about which counselling approach should be used in this case: a directive or a non-directive approach. In this paper we investigate which approach is ethically justifiable by balancing the two underlying principles of autonomy (non-directive approach) and beneficence (directive approach). To overrule one principle in favour of another, six conditions should be fulfilled. We analyse the arguments in favour of the beneficence principle, and consequently, a directive approach. This analysis shows that two conditions are not met; the principle of autonomy should not be overridden. Therefore, at this moment, a directive counselling approach on donor conception disclosure cannot be ethically justified.

To the core of porcine matter: evaluating arguments against producing transgenic pigs

Abstract:  Background:  The production of transgenic pigs for xenotransplantation is based on an urgent human need for transplantable organs. Although the particular genetic modifications are small and do not alter the organism phenotypically, several authors consider it to be morally problematic. In this paper we attempt to establish if there are genuine reasons to refrain from producing ‘humanized’ pigs.

Recipients' views on payment of sperm donors

The aim of this qualitative study was to explore how recipients viewed payment of sperm donors. The study was conducted in Belgium, where, as in many countries, sperm donors receive recompense for their time and expenses. Face-to-face semi-structured interviews were conducted with 34 heterosexual and lesbian couples who, at the time of data collection, had at least one donor-conceived child aged 7-10 years or who were undergoing donor conception treatment. Although participants commonly described the issue of financial compensation as something that did not really concern them, all supported the idea that some level of payment was acceptable or even necessary. The participants also identified several ways in which donor payment offered advantages to their own position as (future) parents. Although the idea is commonly rehearsed that sperm donation is a gift and that monetary transaction for conception is demeaning, the participants of this study did not generally share this view. To them, a small financial return served as a symbolic acknowledgement of the donors contribution and helped secure the type of relationship they expected from their donor. There was clearly concern, however, over high payments and the risk of attracting the wrong kind of donor.

The world is my patient: A discussion of Martine Rothblatt's Your Life or Mine: How geoethics can resolve the conflict between public and private interests in xenotransplantation

Martine Rothblatt’s, Your Life or Mine (Ashgate Publishing, Aldershot, UK, and Burlington, VT, USA, 2004) is a highly recommended book for all those interested in a constructive account on how to pursue xenotransplantation responsibly. The author believes that access to this potentially lifesaving therapy should be part of the right to an optimal level of health care, but not before several societal concerns that limit entitlement to this right are dealt with first. All of these concerns – her focus is on animal welfare, public health risks, and health care budget limitations – ultimately illustrate a potential conflict between private and public interests, but none of them is insurmountable. Her solution to the greatest manifestations of such conflict – the unfair distribution of benefits and potential harms related to xenotransplantation on a global scale – is her most original and controversial contribution. Because the risk of xenogeneic zoonosis is ultimately not assessable, Rothblatt believes this makes it a critical point of focus. Xenotransplantation should only be carried out if the threat to public health can be controlled. While an individual country can design and apply appropriate safety restrictions, emerging viruses do not respect geographical borders. As such, all nations should be universally protected against a potential xenozoonotic outbreak, including those countries that are involved neither in the development nor in the surveillance of xenotransplantation. Unfortunately, large parts of the world lack access to the most basic forms of health care infrastructure and are thus left victim to pandemic threats. This is not only a dangerous gap in global security, it also implies an unjust distribution of the benefits and burdens of xenotransplantation. Consequently, a global buy-in is required to ensure that even the least equipped countries are able to participate in the appropriate detection, treatment and follow-up of xenozoonosis. Consent to this buy-in must be based on globally-oriented values rather than our generally individualistic bioethical principles – a geoethical approach . Therefore, the buy-in should include establishing basic health care support in exchange for randomized blood sampling in those parts of the developing world that lack resources to perform effective xenozoonosis surveillance. The way to implement such a geoethical approach towards xenotransplantation, according to Rothblatt, is by creating a mandatory global oversight, regulation and follow-up organization which she calls Global Enforcement Organization for Xenotransplantation (GEOX). GEOX would enable a win/win situation in which xenotransplantation can be performed under the safest circumstances while also lessening the global health care gap. In addition, the developing world would be given access to 5–10% of all xenotransplants. The author calculates that all GEOX activities can be financed by a US