A blog from the Centre for Research Ethics & Bioethics (CRB)

Category: In the profession (Page 5 of 5)

Interactive conference seeks the value of biobanking

I have the privilege of belonging to a group of ethicists and law scholars that currently discuss how to visualize ethical and legal dimensions of biobanking.

We organize an interactive part of the scientific conference program for HandsOn: Biobanks in September. The conference invites participants to Uppsala to explore the values of biobanking and to take part in its interactive exhibition.

Biobanking is hot in medicine. There are hopes that it will substantially improve diagnosis, treatment and prevention of widespread as well as rare diseases. At the same time, however, the route to such values is difficult to survey, and the goals of large biobank investments are not always entirely transparent.

HandsOn: Biobanks is an ambitious attempt to explore and visualize the values of biobanking and the path towards them.

The conference asks: What are the values sought after? How can they be achieved in practice? There are the ethical, legal, scientific and commercial challenges, but there are also challenges for the industry. How can biobanking affect public trust in medical research and industry?

The conference combines keynote presentations with idea labs and educational sessions. The interactive part of the conference where I participate is called “the Route.” It follows the research process from ethical review, consent, sampling, storage and analysis, to end results that hopefully add value in ethics and trust, in clinical practice, in health economy, and in drug development.

If you want to participate in this interactive conference and help us better understand the values of biobanking, or simply are curious to see how we manage to solve the tricky problem of visualizing ethical and legal aspects – keep these dates in mind:

We are in the midst of brainstorming “the Route.” I hope that future blog posts can share with you some of the ethical and legal issues that we want to visualize and make accessible to participant interaction.

Registration is open – hope to see you in September!

Pär Segerdahl

The economisation of the language of medicine

Two American physicians recently wrote in the New England Journal of Medicine about how they were forced back to school again learning another foreign language. In medical school they learned that measles was called rubeola and itching pruritus. Today they learn that patient is called “customer” (or “consumer”) while doctor and nurse both are called “providers.”

The authors guess that spiralling health care costs drive this “economisation” of their professional language. Economists and politicians believe that the solution to the cost problematic lies in the industrialisation and standardisation of health care. Hospitals are to be run as modern businesses and the traditional language of medicine modified with terms that correspond to the professionals’ new factory functions. Above all, the patient relation is updated as a customer relation.

The two doctors see the economisation of their language as reductionist. It neglects the psychological, spiritual, and humanistic aspects of the relation to the patient. Precisely these aspects made medicine a “calling,” they write. The economisation of medicine concerns not only language, however, but also the organization of work. Doctors are less free to make their own decisions based on their clinical judgment. They are forced to follow manuals written by experts, as if they were on the factory floor following the chief engineer’s scheme.

When I read the article I thought that an alternative way of formulating the problem is in terms of means and ends. The authors’ note that clinical care always had a financial aspect, but the treatment of the patient still was in focus as the doctor’s primary goal. When profit took overhand as the goal, it was seen as a betrayal of the doctor’s calling and worth ridiculing, as in Moliere’s plays. The economisation of medicine turns the relation of means and ends inside out. The end of treating the patient is snatched out of the doctor’s hands and become a means towards other, economic ends. The analysis of the alienation this means is old and it is tempting to hear echoes from another century in the article’s finish, which I cannot avoid paraphrasing: “Doctors and nurses of the world, unite! Through off the language that demeans both patient and professional and that threatens the heart of medicine!”

Simultaneously, one must admit that new generations grow up that do not seem alienated in this new world, but act as self-evident consumers of health care.

Pär Segerdahl

We have a clinical perspective : www.ethicsblog.crb.uu.se

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