C. Tamburrini

The case of biobank with the law: between a legal and scientific fiction

According to estimates more than 400 biobanks currently operate across Europe. The term ‘biobank’ indicates a specific field of genetic study that has quietly developed without any significant critical reflection across European societies. Although scientists now routinely use this phrase, the wider public is still confused when the word ‘bank’ is being connected with the collection of their biological samples. There is a striking lack of knowledge of this field. In the recent Eurobarometer survey it was demonstrated that even in 2010 two-thirds of the respondents had never even heard about biobanks. The term gives the impression that a systematic collection of biological samples can constitute a ‘bank’ of considerable financial worth, where the biological samples, which are insignificant in isolation but are valuable as a collection, can be preserved, analysed and put to ‘profitable use’. By studying the practices of the numerous already existing biobanks, the authors address the following questions: to what extent does the term ‘biobank’ reflect the normative concept of using biological samples for the purposes of biomedical research? Furthermore, is it in harmony with the so far agreed legal–ethical consensus in Europe or does it deliberately pull science to the territory of a new, ambiguous commercial field? In other words, do biobanks constitute a medico-legal fiction or are they substantively different from other biomedical research protocols on human tissues?

What's Wrong With J.S. Mill's "Harm-to-Others"-Principle?

The object of this Essay is to assert one very simple principle, as entitled to govern absolutely the dealings of society with the individual in the way of compulsion and control, whether the means used be physical force in the form of legal penalties, or the moral coercion of public opinion. That principle is, that the sole end for which mankind are warranted, individually or collectively, in interfering with the liberty of action of any of their number, is self protection. That the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others. His own good, either physical or mental, is not sufficient warrant. [...] The only part of the conduct of any one, for which he is amenable to society, is that which concerns others. In the part which merely concerns himself, his independence is, of right, absolute. Over himself, over his own body and mind, the individual is sovereign.”1

Transcending human limitations

In the wake of the explosion of commercialised professional sports, sport medicine has evolved as an increasingly independent area within the general medical landscape. This phenomenon however has not been accompanied by a parallel development in sport medical ethics. Yet, what precisely are the aims pursued within sport medicine? Its scientific ethos might be summarised by the goal of transcending limitations. Unlike general medical practice, which only recently incorporated among its goals and pursuits the amelioration of non-pathological conditions, sport medicine has from its very beginning been driven by the ambition of helping humans of a certain kind – more precisely, professional elite athletes – to surpass the limits of what hitherto has been considered as possible for the species to achieve in a sport arena. This development poses new questions regarding the special circumstances under which medical work is conducted in sports as well as about the central ethical notions that characterise sport medicine. Apparently some of the central ethical concepts usually applied in general medical practice are given a different content when applied in sport medical contexts. While core moral notions such as privacy and autonomy are underlined in the current medical ethical debate, these notions acquire a rather different resonance when applied to sport medicine ethics. In general medicine, patients are seen as autonomous agents, granted the right to decide for themselves whether to submit to a particular treatment or not. Not to undergo treatment, or interrupting it once it has been started, might be related to risks for the patient’s health. Her right to decide for herself is nonetheless respected. In sport medicine ethics, however, a more paternalistic approach seems to be preponderant. Athletes are not allowed to submit themselves to training methods or techniques that are judged, either by the sport community or by sport officials or both, as too risky. An athlete’s consent to undergoing a certain training technique seems to be of less weight than a patient’s consent to submitting herself to a still unsafe treatment. Moreover, even some safe medical measures, intended to enhance the performance of the athlete, are often prohibited in the sport context, now with reference to the ethos of sport rather than with reference to health hazards. While for instance the concert violinist may use beta blockers in order to enhance his or her performance, this cure is proscribed in the world of sports. Nevertheless, parallel to this trend of risk aversion, a certain predisposition to accept more risks is obviously prevalent in the world of sports. Which attitude should sport doctors adopt faced with this fact? This issue is addressed in the first chapter of this volume. In ‘Doctoring risk: Responding to risk-taking in athletes’, Linley Anderson addresses the question of athletes who wish to compete in spite of a high risk of injury. Sport, Ethics and Philosophy, Vol. 1, No. 2, August 2007