(THIS ARTICLE IS MACHINE TRANSLATED by Google from Norwegian)
Of:
Camilla Stoltenberg, director, professor, PhD, Public Health Institute.
Gun Peggy Knudsen, Area Director Health Data and Digitization, Public Health Institute
Kristian Hveem, Head of KG Jebsen Center for Genetic Epidemiology, Professor, PhD, NTNU
Steinar Krokstad, Managing Director of HUNT Research Center, Professor, PhD, NTNU
Journalist Tori Aarseth asks in the front page article of Ny Tid's September newspaper if we are taking the life of privacy with our medical research for new treatment methods. In the article, there are several allegations that require an answer on our part.
Want an informed debate. It is clear that more and more people will have their genetic material mapped out, and that genetic research opens up new knowledge and new and more effective treatment and prevention. We agree with that. We welcome an informed and open debate on the benefits and disadvantages of this. The topic is still relevant for us at the Norwegian Institute of Public Health and the Norwegian University of Science and Technology (NTNU). We have an ongoing discussion about ethical issues and safe privacy, and discuss these issues repeatedly in our applications to the Regional Committees for Medical and Health Research Ethics (REK).
International efforts, such as The Precision Medicine Initiative in the United States, the EU's research funding for Personalized Medicine, and several European countries' national plans for personalized medicine show that international research has raised doubts that genetic research and personalized medicine will have significant benefits and offer great opportunities for better treatment. This should also apply to people living in Norway?
Weird claims. In the article, medical geneticist Ellen Blinkenberg, associate professor Kjetil Rommetveit and director of the Data Inspectorate Bjørn Erik Thon suggest in slightly different ways that actors like NTNU and the Norwegian Institute of Public Health weaken informed consent and privacy.
Blinkenberg points out that she is critical of the way we in HUNT and MoBa have "mapped people's genes", related to flying and resolved concerns about what such data could possibly be used by various players in the future. Both she and Rommetveit claim that we do not inform participants well enough about how we use the data in the research. It is more than suggested that we who are conducting genetic research, under-communicate or try to deceive people.
We want to emphasize that we have only one purpose in our research: to contribute to better medical practice. We always ensure that all use of genetic data and other data in research projects is approved by REK. In addition, we conduct ongoing and comprehensive information activities against both the general public and participants through their own information letters and newsletters in particular on genetic research, privacy and the use of this data in research. In order for the information to be as up-to-date and exhaustive as possible, we are now establishing a national website for communication with the research participants. The website is established under the auspices of the e-Health Directorate.
Sales of data is not applicable. Blinkenberg says in Ny Tid that the National Institute of Public Health can "sell the biobank", so that, for example, insurance companies or "lugubrious" research groups can use genetic data for their own purposes. This is an uninformed and unrealistic statement. No public administrator of a biobank, or researcher with gene data has lov to sell biological samples or data. We also have no desire to sell samples or data. What we want is to achieve cooperation with industry on the development of better diagnostics, prevention and better medical care that can be used in health services worldwide. But for safety, we repeat: Sales of data and samples are not applicable.
For HUNT and MoBa, secure solutions that safeguard data security and privacy are a statutory task – and crucial to maintaining the trust of the participants and the population. All research and use of data is subject to extensive security routines, and researchers have a duty of confidentiality. All data is handled considering that there is sensitive health data we are dealing with. We are constantly concerned about how we can improve, precisely because genetic data cannot be fully anonymized. We collaborate nationally on further development of optimal solutions for secure storage of sensitive data.
Genetic research makes us even better at privacy.
Among other things, we work with solutions that make us no longer supply data files for research, but instead offer researchers access to data in secure database solutions regionally or nationally. Services for sensitive data at the University of Oslo are one such solution. We also believe that technological encryption solutions will help in the near future strengthen your privacy, so the answer to Aarseth's overarching question – whether we kill privacy – is a clear no. On the contrary, gene research makes us even better at privacy.
Research is needed. In conclusion, Ellen Blinkenberg wants people to think through whether it is okay that the genome be mapped, and that you become test subjects as soon as you are admitted to the hospital. This is not the case today, and we have no reason to believe it will be so. HUNT, MoBa and similar studies are based on informed consent and ongoing contact with the participants. Participants can withdraw at any time, they are entitled to access their own data and research information. No one will be the subject of hospitalization. Residents in Norway have the right to reserve themselves for research that uses biological material that is routinely collected in the health service.
We also want people to think through what the consequences can be if the opportunities for genetic research are too limited. We expect everyone to receive the best treatment available on the day they are hospitalized. Then it is important to remember that research is necessary to develop and drive the most effective treatment and prevention, but also to avoid side effects and injuries. New knowledge is crucial for patients and the population today and in the future.
Reply from journalist Tori Aarseth:
Principal ethical issues are not "claims".
In recent months, Ny Tid has put the spotlight on various aspects of genetic research, both positive and negative. The National Institute of Public Health and the management at HUNT have experienced the latest article in the series as a direct attack on them, despite the fact that the article primarily covers an overall and international trend. Ny Tid is positive about genetic research and the potential health benefits from the field. At the same time, it is important to recognize that collecting large amounts of personal data has a cost. Principled, ethical questions about current trends must be able to be investigated and elucidated without this being interpreted as an attack on today's institutions.
Then to Ellen Økland Blinkenberg's concrete references to HUNT and the Public Health Institute. On HUNT's own website it says: “All data […] is de-identified. This means that the name, date of birth and social security number have been deleted so that data cannot be associated with any individual. " The problem Blinkenberg addressed is that when you save an entire genome, it is possible to re-identify the person it belongs to. Such data can thus linked to individuals. The chronicle authors also say that selling biobanks is a real-life scenario. With all due respect, it is certainly strictly outside the management of the Institute of Public Health and HUNT's power to provide such future guarantees. This is a market that is growing internationally, and there is no reason to believe that Norway will be an isolated island in this context.
