Does research threathens privacy or does privacy threathens research?
Roijen, E.Y. van
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From 1970 onwards the handwritten medical cards which the General Practitioner (GP) used were replaced by Electronic Health Records (EHRs). While at first the information was stored on the GP’s local server, in the 90-ies computers were linked and gradually more persons had access to EHRs. While currently the EHRs are on Local Health Servers in the region, advocates in health care strive to have them nation-wide accessible to them. The EHRs, however, contain sensitive information and in the Netherlands the Law on protection of personal information (WBP) regulates data protection, including sensitive information. Sensitive information however is hard to define. So part of the WBP is based on the control of patients over the content of EHRs and the obligations researchers have to use anonymised records or ask for an informed consent to use them. Traditionally, information on EHRs relates to the past, but nowadays we have the tools to make predictions about risks for future diseases by looking at a persons’ genetic make-up. Genetic information is unique, so the source of biospecimens can theoretically always be traced. In this paper we scrutinise which moral safeguards are to be taken into account to protect research participants privacy when they provide their biospecimens to a national health database for all kind of research. Specific technological developments contribute to a raise of our moral concerns on privacy issues. The technique of datamining creates group profiles based on sometimes arbitrary and not causally related patterns, like e.g. persons driving red cars are likely to contract cancer. Life insurance companies may adjust their premiums based on this group profile. In the process of deliberating about participation in research moral appeals are made by the public about protection of privacy and confidentiality. However, the traditional concept of direct bilateral confidentiality in a physician-patient relation has already vanished with the linkage of computers. We therefore need to adjust our concept of confidentiality. Although more people have access to EHRs, so more confidential information is available to more persons, this does not mean that these persons also have knowledge. The significance knowledge has for a person depends largely on the data holder’s cognitive and practical commitments. Information acquires normative significance only because it can be used in certain actions and therefore possession of information is significant, only against some background, while we are tended to believe that information itself has some intrinsic value. It is the use of certain information that raises moral rebuke and should therefore be subject to obligations. So, instead of trying to establish a right to informational privacy over content, which is where the WBP is based on, we might turn to search for criteria to distinguish between morally licit and illicit acts of communicating and disseminating. In this paper I will come to the conclusion that although informed consent is important, it turns out to be insufficient. Identification can be done with anonymised information, where no consent is required, while results can have a major impact for individual’s privacy and social life. So, if the current privacy safeguards as anonymising data, the ‘informed consent’ notion and the concept of traditionally confidentiality can be regarded as problematic, we need to find new or other moral safeguards if we value biomedical research and want to provide our biospecimens for the benefit of society. Partly we have to (re)establish trust in the research community. However, additional safeguards need to be put in place as well and I will make some suggestions related to publishing results, which may have negative consequences and introduce the concept of ‘warrant assent’ added to the ‘informed consent’ in case of general use of biospecimens. Additional to that justificatory conditions have to be fulfilled to obtain an ethically justified assent by data subjects. At the same time society needs to audit the research community and be willing to actively take part in the discussions on which values we consider important. Society needs to discuss which research questions they consider licit or illicit and which research results having an impact in some individuals lives we think are fair or unfair.