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Published: 2019-11-21 10:48 | Updated: 2019-12-16 09:32

Consent and data laws in focus when KI’s Ethics Council held its first seminar

What factors are important to consider when researching vulnerable groups? What problems may arise when rolling out AI in health care? And is it even possible to conduct research in light of more rigorous data laws? Those were three hot issues brought up when Karolinska Institutet’s Ethics Council on Tuesday held its first of several planned seminars about ethics in research.

In the wake of the Paolo Macchiarini-matter, KI has taken several measures to strengthen its work with research ethics. For one, a new Ethics Council was established toward the end of 2018 to ensure that a discussion about ethics takes place within KI. This council is not responsible for handling individual matters, involving for example scientific misconduct or research fraud, but will rather focus on driving KI forward in issues concerning ethics in medical research.

“KI should be proactive in ethical matters,” said President Ole Petter Ottersen during his opening speech in Samuelsson-salen on Campus Solna. “We have, after what has happened, a responsibility to take the discussion about medical ethics also on the international stage.”

Photo of Claes Frostell at Ethics Council seminar.
Claes Frostell, chairman of the Ethics Council and KI:s scientific representative. Photo: Stefan Zimmerman.

The idea is that the makeup of the Ethics Council, which is chaired by Claes Frostell and includes both KI-internal and external members from several different disciplines and educational institutions, should help broadening the view on ethics in research at KI and provide an external perspective. Besides medical experts, the council also includes a philosopher, a theologian, a lawyer and a writer/playwright.

The various points of views were well represented during the seminar’s panel dialogue during which the audience offered their perspectives and asked questions. One question that came up was how researchers should think about the climate goals. The council’s members seemed to agree there are opportunities to advance how KI uses online meetings, open courses and Skype for thesis defenses to minimize its climate footprint.

Balancing act

Another hot potato that sparked intense conversations involved the new data laws, GDPR, that to some degree have limited researchers’ abilities to use the large amounts of health data collected at the hospitals and material gathered in biobanks. While some argued that the rules around informed consent have become so complicated that they hamstring research, others pointed toward the need to protect personal integrity.

“The Swedish Data Protection Agency always looks at personal integrity while KI always looks at research. But both parties have to find some middle ground to move forward,” said Jane Reichel, professor in administrative law at Stockholm University and member of the ethics council.

Photo of Ole Petter Ottersen during Ethics Council meeting.
President Ole Petter Ottersen with members of the Ethics Council during the panel conversation. Photo: Stefan Zimmerman.

Ole Petter Ottersen noted that the Committee for Technological Innovation and Ethics, which offers advice to government agencies in matters of health and technology, has asked for feedback by Dec. 6 on this particular issue – how consent should be regulated for research that weren’t specified in detail when the consent was given. “This is something we have to be part of now,” he said, after hearing the discussions.

Litmus test

KI professor and council member Anna Mia Ekström, who studies sexual and reproductive health and rights including HIV, emphasized the importance of seeking informed consent from vulnerable participants such as the medically ill or young people and children. She noted, however, that it is not always more ethical to avoid researching sensitive subjects.  

”A good litmus test to ask yourself is ‘would I want to be part of this or have a relative be part of this research,” said Anna Mia Ekström.

Another subject addressed by Gert Helgesson, professor in medical ethics and another member of the council, was challenges and benefits associated with artificial intelligence in health care. Quick analyses of large amounts of data could help save resources and improve diagnostics but may also pose a threat to personal integrity and lead to incorrect conclusions, he said.