ELSI: Inter-connecting legal frameworks, ethical and social issues


BBMRI-ERIC is a joint European platform for biobanking where ELSI service is considered a key asset. Moa Kindström Dahlin, doctor of public law, is the legal expert in the Uppsala team. Here she offers an update.

Moa Kindström DahlinBBMRI-ERIC will provide a workable research infrastructure to process, share and store human biological samples, including associated medical data. Part of this work is providing a common service for the ethical, legal and societal issues. Our expert team is part of this service with Mats G. Hansson, professor of biomedical ethics, Heidi C. Howard, geneticist and bioethicist, and myself representing public law.

From a legal perspective, we map out and analyze the relevant law: locally and globally. Many of the legal themes relate to data protection and sharing of data: Situations where the individual's right to privacy is challenged by the public interest to promote research and gain new knowledge.

Law is contextual. The result of its application differs depending on situation, time and place. There is rarely an obvious answer, and often several different interpretations need to be made. When there seems to be a gap in the law, it is up to the lawyers to bridge it. The very idea that law is a system that provides all the answers means that lawyers are trained to find them all. And if we can't, we have to create them. With this task comes great power. If a lawyer states that something is a description of what law is, it can be used to argue for policy change. Legal frameworks are interconnected
with ethical and societal issues. One of the main tasks for every lawyer is to handle colliding interests. This is also true for the biobank sphere.

Biobank law is a legal field in flux affected by the ongoing international debate over which principles that should be applied and considered most important. This can be seen in interesting court cases, in the negotiations regarding the forthcoming EU-regulation on data protection and national (Swedish) statutes under revision. The specific legal issues that arise within BBMRI-ERIC pose questions of a more philosophical nature: Where do we draw the line between law and politics? Where does the law end? Being a lawyer in the ELSI service team demands a high level of trustworthiness when handling these hard and very important legal questions that are also ethical and societal.

By Moa Kindström Dahlin

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