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End-of-life debate Court upholds researchers’ right to privacy

The issue was decided in the Swiss Federal Court


The public’s right to information does not supersede researchers’ right to privacy, the Swiss Federal Court has ruled. At issue was a dispute between the Swiss National Science Foundation (SNSF) and assisted suicide organisation Dignitas. 

The dispute concerned the SNSF‘s National Research Programme 67external link, which allocated CHF15 million ($15 million) to research on the topic “End of Life”. 

Through the lawsuit, Dignitas, Exit Romandie, Exit German Switzerland, Lifecircle and EX International had hoped to expose the bias they believe exists in this SNSF research project. 

NRP 67 began with a call for proposals in 2011. In 2013, Dignitas had requested information about nine of the 33 research projects falling under the project’s umbrella. Although the SNSFexternal link provided partial access to the research proposals of the nine projects, it refused access to the synopses and comments of reviewers who evaluated the project proposals. 

According to SNSF Director Daniel Höchli, releasing reviewers’ confidential comments to outside organisations could potentially threaten the privacy of both researchers and reviewers. 

“The question is: where do we draw the line between public rights and privacy rights?” Höchli told 

Appeal to the courts 

Citing the Freedom of Information Act, Dignitas and four other organisations which provide assisted suicide services in Switzerland brought the matter to the Federal Administrative Court in St Gallen. This first court decided that the SNSF must grant access to the synopses and confidential reviewer comments. 

“In our view the Federal Administrative Court did not consider privacy rights,” says Höchli. 

The SNSF appealed to the Federal Court in Lausanne. Five judges debated the issue on Wednesday, with the majority (3 to 2) deciding in favour of the SNSF. The court’s detailed ruling will be available in the coming weeks. 

With its decision, the Federal Court “confirms that the SNSF has correctly distinguished between public and private information,” the SNSF stated in a media releaseexternal link.

Dignitas, on the other hand, released a statement saying: “The judicial process showed one thing above all: that the freedom of information act doesn’t deliver what it promises.” 

In its media release responding to the court’s decision, Dignitas also claimed that the SNSF’s research is ideologically biased and does not support the freedom to choose assisted suicide guaranteed in Switzerland. 

Support for assisted suicide 

Assisted suicide is legal in Switzerland on the condition that patients commit the act themselves and helpers have no vested interest in their death. The Swiss public has voted on several occasions in favour of maintaining the freedom to choose to use such services, and there are a number of organisations that help people in Switzerland end their lives. Currently, the German parliament is considering legislation that could make assisted suicide illegal and would have ramifications for organisations in Switzerland. 

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“The national research project 67 ‘End of life’, led by conservative, religious and foreign workers, is essentially an attempt to subvert the will of the Swiss people, using the taxpayers’ money,” the statement said. 

Informing the people 

“We try to fulfil the obligation of this act by giving as much information as possible, and then protecting all the rest,” counters Höchli. To this end, the SNSF maintains a searchable project databaseexternal link on its website in which funded projects are listed along with their summaries, responsible researchers, staff members, related publications and presentations, and amount of money awarded. 

The two organisations have different views of what was being addressed in the lawsuit, says Höchli. 

“For us it’s a legal question that affects all researchers funded by SNSF, and for Dignitas, it’s related to this particular research programme.”

According to Höchli, the information Dignitas wanted “wouldn’t have helped prove if these – or any other – SNSF projects have an ideological bias or not”. 

Bias in the background 

In a two-page response to questions from, Dignitas said it was initially willing to cooperate with researchers on one of the End-of-Life studies, but over a period of time “it became clearer and clearer that games were being played, information withheld, biased research done”. 

Dignitas had the impression that some of the SNSF studies dealing with assisted suicide were biased; for example, that a questionnaire to be sent to Dignitas members “had a taste of trying to predetermine certain answers” through the use of negatively formulated questions.

Dignitas also believes that “what is going on in Germany regarding assisted dying – towards prohibition, narrowing of freedom of choice and self-determination” –is being perpetuated in many of the SNSF studies through a group of researchers who have ‘imported’ their “conservative, religious, paternalistic ideas about end-of-life-choice.”

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