Footnotes

• ↵i In this paper I use arguments developed for a paper I wrote with my colleague Søren Holm. See our paper, Should we presume moral turpitude in our children?¹; my chapter, Research on human subjects, exploitation and global principles of ethics,² and my paper, Ethical genetic research.³ Recently these themes have been taken up by Martyn Evans. See his paper, Should patients be allowed to veto their participation in clinical research.⁴

• ↵ii Here the argument is restricted to research projects that are not merely aimed at producing knowledge. Unless an increase in knowledge is a good in itself (a question I will not discuss here) some realistic hope of concrete benefits to persons in the future is necessary for the validity of our arguments.

• ↵iii It is perhaps also worth pointing out that there is a separate question about whether this moral obligation should be enforced on those who do not discharge it voluntarily. This is not a question I will discuss here.

• ↵iv I owe this formulation of the interest I have in being a moral agent to Søren Holm.

• ↵v I use this term in a non-technical sense.

• ↵vi Those over 65 may be excused if they wish.

• ↵vii Of course the historical explanation of the Declaration of Helsinki and its concerns lies in the Nuremberg trials and the legacy of Nazi atrocities. We are, however, I believe, in real danger of allowing fear of repeating one set of atrocities to lead us into committing other new atrocities.

• ↵viii Figures are for 2003, with an estimated five million people newly acquiring HIV in that same year.²⁸

• ↵ix The CIOMS gloss on their own guidelines creates a kind of Catch 22 which is surely unreasonable and unwarranted. Wherever the best proven diagnostic and therapeutic methods are guaranteed by a study in a context or for a population who would not normally expect to receive them, this guideline would be broken. The CIOMS guideline four therefore surely contradicts and violates not only the Declaration of Helsinki but also its own later guideline 14.

• ↵x This obligation has been partly endorsed by the Hugo Ethics Committee in its Statement on Human Genetic databases.³⁷ However, like so many statements by august ethics committees the Hugo statement contains not a single argument to sustain its proposals or conclusions. This paper and those referred to in references 1, 2, 3, and 4 above provide the missing arguments. For a critique of the operation of national and international ethics committees see the introduction to my book, Bioethics.³⁸