Controlling chronic inflammatory diseases with combined efforts (COMBINE)
There are both national and international studies on public perceptions of medial research: How we perceive genetic research, and how scientists use human biobanks and animal models. There is, however, a lack of knowledge about how patients, or end users, of this knowledge, perceive these issues.
From an ethical point of view, this is a major concern since it is these groups, the patients, that most directly suffer or benefit from the results of the research the scientists conduct. Patients are actively participating by donating blood, medical information and by testing medicines, and patients are in the end also the most important: the end users.
The COMBINE consortium aimed to investigate how patients perceive research on chronic inflammation. And to create a network of scientists, clinicians, patients and industrial representatives, which together can use unique Swedish advantages to improve understanding of why inflammatory diseases develop, what are the most essential goals for patients to achieve, and to develop and implement novel prevention and therapy for these diseases. The operational strategy was to create infrastructure and programs where systematic capture of data takes place in routine healthcare and is utilised in research, and where the same infrastructure is used to feed information from research back to healthcare.
The consortium consisted of clinicians/scientists, biomedical scientists, epidemiologists, care scientists, bioethicists, members of patient organisation, and representatives from industry. The steering committee was chosen to both represent all medical faculties/universities in Sweden and to have a track record of building functional national research networks.
CRB's Role in COMBINE
The Centre for Research Ethics & Bioethics participated with Work Package 13 on Ethics.
Masterton M, Renberg T, Kälvemark Sporrong S, Patients’ Attitudes Towards Animal Testing: “To Conduct Research On Animals Is, I Suppose, A Necessary Evil”, BioSocieties, 2014;9(1).
Masterton M, Renberg T, Hansson MG, Kälvemark Sporrong S, Ethical Review Boards are poor advocates for patient perspectives, Research Ethics, 2014;10(3):169-181.
COMBINE Consortium (Vinnova, Vårdalstiftelsen, Reumatikerförbundet, Invest in Sweden Agency, KK-stiftelsen, Stiftelsen för strategisk forskning)
Contact at CRB
- Mats G. Hansson, Professor of Biomedical Ethics
- Malin Masterton did her postdoc within the COMBINE consortium. She defended her thesis on retrospective DNA technologies an integrity for historical persons at CRB in 2010.
- Tobias Renberg, did his postdoc within the COMBINE consortium. e received his PhD in Social Pharmacy from Uppsala University in 2009, defending a thesis about Patient Perspectives on Community Pharmacy Services.
- Sofia Kälvemark Sporrong received her PhD from Uppsala University in 2007. She was associated to CRB between 2007-2010. Her research dealt with ethical competence and moral distress in health care, including pharmacies.
Biobank and registry ethics & law
For many years, researchers at CRB have provided constructive advise on how to deal with ethical and legal aspects of research using human tissue material and personal data. We have collaborated with biomedical scientists and published our findings in peer reviewed journals. As a summary of this research we have compiled a list of publications with abstracts. We have grouped them thematically to help you find the ones you might be interested in reading. Our publications deal with ethical frameworks and policy, regulatory aspects of biobank and registry research, informed consent, ethical review, integrity concerns, trust, genetic testing, indicental findings, commercialization, public and patient perceptions, rare diseases, children & biobanks & genetics, and biobank studies.