Mats J. Hansson

In the debate about human bio-sampling the interests of patients and other sample donors are believed to stand against the interests of scientists and of their freedom of research. Scientists want efficient access to and use of human biological samples. Patients and other donors of blood or tissue materials want protection of their integrity. This dichotomy is reflected in the Swedish law on biobanks, which came into effect 1 January 2003. In this article I argue that if the basic interest of scientists using human biological samples is in increasing knowledge and developing better treatments, and if the concept ‘integrity’ is properly understood, then sample donors should also be interested in promotion of efficiency as well as in the protection of their integrity. The basic premise of this argument is that donors of samples have interests related to the donation and use of samples as well as to the use of the results of the research, that is, new medical products and treatments. They have a role both as donors or participants in research and as end users of the research. I conclude that if access to information acquired through biobank research is strictly limited to researchers, the information is protected by secrecy safeguards through coding and the procedures governing the research are open to public and democratic control, then most research using human biobanks may be carried out on the basis of making general information available when collecting biological samples, without further contact with participants

Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents (ethics guidelines), overseeing bodies (research ethics committees) and formal procedures (informed consent). The process of institutionalizing distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustworthiness of the research system. This article examines some limitations of this approach. First, past atrocities cannot provide the necessary justification unless institutionalized distrust is a necessary or efficient means to prevent future ones – and there are several reasons to doubt this. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers – the very qualities that institutionalized distrust calls into question. Third, ethics guidelines cannot, as is sometimes assumed, educate or guide researchers in moral behaviour unless they already possess considerable capacity for moral judgment. Fourth, institutionalized distrust is a potential threat to the moral competence and integrity of researchers by encouraging a blinkered view of ethical issues, inducing moral heteronomy through incentives, and alienating them to research ethics. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences if their moral competence is allowed to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and are not obstructed from so doing

Today, certain rule-violating behaviours, such as doping, are considered to be an issue of concern for the sport community. This paper underlines and examines the affective dimensions involved in moral responses to, and attitudes towards, rule-violating behaviours in sport. The key role played by affective processes underlying individual-level moral judgement has already been implicated by recent developments in moral psychological theories, and by neurophysiological studies. However, we propose and discuss the possibility of affective processes operating on a social level which may influence athletes' individual-level attitudes. We conclude that one-sided focus on individual rule-violating behaviour and individual sanctions may prove to be ineffective in coming to terms with the issue. In this regard we recommend a twofold approach by addressing underlying social dimensions, along with preventive measures through affect-oriented education

There is an increased focus on, and evidence of, children's capability to both understand and make decisions about issues relating to participation in medical research. At the same time there are divergent ideas of when, how and to what extent children should be allowed to decide for themselves. Furthermore, little is known about parents' views on these matters, an important issue since they often provide the formal consent. In this questionnaire study of 2500 families in south-east Sweden we explored parents' views on issues relating to information, consent and research data. We found that parents are generally positive about supplying their child with individual information and assuring the child's consent/assent to participation. However, parents' views vary regarding the extent to which children should influence research data: as many as 47–61% of our sample were opposed to children's rights to decide about the use and storage of biological samples and natural history data. Parents who are opposed to child consent and a wider influence on their research participation argue that parental authority and research quality are two important factors opposing enhanced child influence. Drawing on this, we underline the need to discuss how to balance children's rights against parental autonomy and research interests before implementing any standardized protocols granting children the right to consent and revoke data in long-term research.

Queen Christina of Sweden was unconventional in her time, leading to hypotheses on her gender and possible hermaphroditic nature. If genetic analysis can substantiate the latter claim, could this bring the queen into disrepute 300 years after her death? Joan C. Callahan has argued that if a reputation changes, this constitutes a change only in the group of people changing their views and not in the person whose reputation it is. Is this so? This paper analyses what constitutes change and draws out the implications to the reputation of the dead. It is argued that a reputation is a relational property which can go through changes. The change is “real” for the group changing their views on Queen Christina and of a Cambridge kind for the long dead queen herself. Cambridge changes result in new properties being acquired, some of which can be of significance.

It is not contoversial to state that acts of fraud do not belong in the academic world. What is debated is the best way to minimise the risk of fraudulent behaviour. Broadly speaking there are two different approaches to this problem. They differ with regard to whether the main focus is on internal or external control. In this article I argue that the main emphasis should be on internal structures in order to achieve the desired end. Only when the internal structures are in place is it meaningful to adopt external, supportive means to the same end. Invitation to the academic project as such, education and training in research ethics and good research practice, the implementation of good documentation procedures and the implementation of a procedure for investigation of suspicions of fraud which is characterised by efficiency, impartiality and competence are the four primary ingredients in the cure. The first three are suggested to build up the necessary foundation before a structure of investigation procedures are established.

The empirical basis for this article is threeyears of experience with ethical rounds atUppsala University Hospital. Three standardapproaches of ethical reasoning are examined aspotential explanations of what actually occursduring the ethical rounds. For reasons given,these are not found to be satisfyingexplanations. An approach called ``imaginativeethics'', is suggested as a more satisfactoryaccount of this kind of ethical reasoning. Theparticipants in the ethical rounds seem to drawon a kind of moral competence based on personallife experience and professional competence andexperience. By listening to other perspectivesand other experiences related to one particularpatient story, the participants imaginealternative horizons of moral experience andexplore a multitude of values related toclinical practice that might be at stake. Inhis systematic treatment of aesthetics in theCritique of Judgement, Kant made use ofan operation of thought that, if applied toethics, will enable us to be more sensitive tothe particulars of each moral situation. Basedon this reading of Kant, an account ofimaginative ethics is developed in order tobring the ethical praxis of doctors and nursesinto sharper relief. The Hebraic and theHellenic traditions of imagination are used inorder to illuminate some of the experiences ofethical rounds. In conclusion, it is arguedthat imaginative ethics and principle-basedethics should be seen as complementary in orderto endow a moral discourse with ethicalauthority. Kantian ethics will do the job if itis remembered that Kant suggested only amodest, negative role of principle-baseddeliberation

Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and tim..