In the UK, the legal processes underpinning the procurement system for cadaveric organs for transplantation and research after death are under review. The review originated after media reports of hospitals, such as Alder Hey and Bristol, retaining organs after death without the full, informed consent of relatives. The organ procurement systems for research and transplantation are separate and distinct, but given that legal change will be applicable to both, some have argued now is the time to introduce alternative organ transplant (...) procurement systems such as presumed consent or incentive based schemes . Findings are reported in this paper from qualitative and quantitative research undertaken in Scotland in order to ascertain the public acceptability of different procurement systems. Nineteen in depth interviews carried out with donor families about their experiences of donating the organs of the deceased covered their views of organ retention, presumed consent, and financial incentives. This led onto a representative interview survey of 1009 members of the Scottish public. The originality of the triangulated qualitative and quantitative study offers exploration of alternative organ procurement systems from different “sides of the fence”. The findings suggest that the legal changes taking place are appropriate in clarifying the role of the family but can go further in strengthening the choice of the individual to donate. (shrink)

Every day in the United States 17 people die waiting for an organ transplant. The waiting list for organs, which now contains the names of 82,000 people, has more than tripled in the last 10 years. The U.S. policy on who can donate an organ is based both on previous consent of the potential donor and on the consent of the donor's family. This foundation greatly limits the number of potential donors. Spain is the world's leader in providing organs to (...) its population, and the underlying principle of their policy on donors in presumed consent. That is, those people who have not expressly opposed donating their organs are considered eligible for donation. This policy, along with a plan of public education and a strong infrastructure for organ procurement, is what has enhanced their donor rates. Spain is not alone: other countries have seen the benefits of presumed consent and the limits of opt-in systems. The United States must put to use the experiences of these countries to stem the tide of organ shortage and give new life to those desperately awaiting organs. a. (shrink)

This paper looks at the issue of consent from children and whether the test of Gillick competency, applied in medical and healthcare practice, ought to extend to participation in research. It is argued that the relatively broad usage of the test of Gillick competency in the medical context should not be considered applicable for use in research. The question of who would and could determine Gillick competency in research raises further concerns relating to the training of the researcher to make (...) such a decision as well as to the obvious issue of the researcher’s personal interest in the project and possibility of benefiting from the outcome. These could affect the judgment of Gillick competency if the researcher is charged with making this decision. The above notwithstanding, there are two exceptional research situations in which Gillick competency might be legitimately applied: when the research is likely to generate significant advantages for the participants while exposing them to relatively minor risks, and when it is likely to generate great societal benefit, pose minimal risks for the participants and yet raise parental objection. In both cases, to ensure that autonomy is genuinely respected and to protect against personal interest, Gillick competency should be assessed by an individual who has no interest or involvement in the research. (shrink)