Research data, health cyberspace and direct-to-consumer genetic testing

December 14, 2016

josepine-fernow2We live in a global society, which means there are several actors that regulate both research and services directed at consumers. It is time again for our newsletter on current issues in biobank ethics and law. This time, Biobank Perspectives  lets you read about the legal aspects of direct-to-consumer genetic testing. Santa Slokenberga writes about her doctoral dissertation in law from Uppsala University and how the Council of Europe and the EU interact with each other and the legal systems in the member states. She believes direct-to-consumer genetic testing can be seen as a “test” of the European legal orders, showing us that there is need for formal cooperation and convergence as seemingly small matters can lead to large consequences.

We also follow up from a previous report on the General Data Protection Regulation in a Swedish perspective with more information about the Swedish Research Data Inquiry. We are also happy to announce that a group of researchers from the University of Oxford, University of Iceland, University of Oslo and the Centre for Research Ethics & Bioethics at Uppsala University received a Nordforsk grant to find solutions for governance of the “health cyberspace” that is emerging from assembling and using existing data for new purposes. To read more, download a pdf of the latest issue (4:2016), or visit the Biobank Perspectives site for more ethical and legal perspectives on biobank and registry research.

Josepine Fernow

This post in Swedish

Approaching future issues - the Ethics Blog


More biobank perspectives

September 27, 2016

If you did not get your fill during the Europe biobank week in Vienna, we give you more biobank related news in the latest issue of Biobank Perspectives, our newsletter on current issues in biobank ethics and law.

This time, Moa Kindström Dahlin describes what BBMRI-ERIC’s new federated Helpdesk for ELSI-issues can offer. We also invite you discuss public-private partnerships in research at a workshop in Uppsala on 7-8 November.

The legislative process on data protection in the EU might be over for now but there is still activity in government offices. Anna-Sara Lind gives you her view on the consequences for Sweden. We are also happy to announce that the guidelines for informed consent in collaborative rare disease research have received the IRDiRC Recognized Resources label.

You can read the newsletter on our website, or download a pdf version.

Josepine Fernow & Anna-Sara Lind

This post in Swedish

We recommend readings - the Ethics Blog

 

 

bbmri.se


Legal abortion: the right to move on

April 13, 2016

Pär SegerdahlWith brave new ideas you can astonish the world. In the past months the youth association of the Swedish party, the Liberals, made several proposals that astonished not least the mother party – for example, that incest and necrophilia should be allowed. The state should not control individuals’ love life.

Probably, the young politicians are quite proud of their radicalism. They are more liberal than liberalism itself. But what is their radicalism made of?

In March, another radical proposal was made. This time it was about abortion. Women have the right to choose abortion until the 18th week of pregnancy. But men don’t have a corresponding right to opt out of their parenthood. The proposal is about correcting this unfair distribution of the freedom to decide about parenthood.

How? By giving men the right to disclaim paternity until the 18th week of pregnancy: so-called legal abortion. Through the proposal, men get the same right as women to decide if they want to become parents. Thus, justice is restored.

One can surmise that the mother party dreams of making their own little abortion. But listen to how splendid it can sound when one astonishes the world with brave new ideas:

  • “It’s about men also being able to choose whether they want to become parents or not.”
  • “Men should have the same right to opt out of parenthood.”

Indeed, it sounds magnificent: the liberal youth association wants to correct a fundamental asymmetry between the rights of men and women! They are fighting for a more equal society!

I suggest that the “equality” here is purely verbal. It sits on the surface of an individualist language of rights and freedoms, with the words “man,” “woman” and “equal right.” Scratch the surface and the beautiful symmetry disappears.

One thing that is hidden by the jargon, for example, is that the woman’s decision concerns a fetus. But if she doesn’t abort, the man’s abortion decision will be about a child who will be born, and who will live, “legally aborted.”

Another thing that is hidden is that if the woman chooses abortion, neither party becomes a parent, because no child is born. But if she gives birth to the baby, the man will be the father of the child, whether he disclaims legal paternity or not. Law is not everything in life. When a child is born, there is a parenthood that cannot be disclaimed, for the child can say: “My father aborted me.” Only the woman’s abortion decision can completely abolish parenthood.

A third thing that is hidden is that something rings false in the individualist talk about parenthood as my parenthood and your parenthood; as the woman’s parenthood and the man’s. To crown it all, the fetus as well as the child are absent in this reasoning about male and female parenthood – curious! Are they already aborted? Did the young politicians forget something rather central, in their eagerness to develop truly liberal ideas about parenthood?

In order not to be disturbed by all this, in order not hear how false it rings, one must purify an individualist jargon of rights and freedoms, and then lock oneself in it. This is where the youth association’s radicalism lies: in language. It purifies (parts of) the language of liberalism, but as mere linguistic exercises with the words “man,” “woman” and “equal right.”

The radicalism isn’t political, but linguistic. Therefore, one feels instinctively that the discussion that the youth association wants to start up cannot be political, but merely continued exercise of pure concepts – like when schoolchildren plod through grammatical examples to one day be able to speak a language that still is foreign to them.

Ludwig Wittgenstein described such pure conceptual exercises as language that idles, like an engine can idle without doing its work. In this case, it is the language of liberalism that is idling.

I propose a good dose of Wittgenstein.

Pär Segerdahl

This post in Swedish

Minding our language - the Ethics Blog


Global bioethics: each culture its own “ethnobioethics”?

April 6, 2016

Pär SegerdahlWith globalization bioethics is spread over the world. The process isn’t without friction, since bioethics is associated with Western philosophy. Is that thinking applicable to other cultures? Parts of the world where bioethics is spread may also have a colonial history, such as Africa. Should they now once again come under Western influence?

In an article in the Cambridge Quarterly of Healthcare Ethics, Sirkku K. Hellsten discusses the role of philosophy in global bioethics. She uses the example of Africa, where discussions about a unique African philosophy have been intense. But she also quotes Henry Odera Oruka, wondering why so much time is spent discussing what distinguishes African philosophy, when so little time is devoted to actually practicing it.

To investigate the role of philosophy in global bioethics, Hellsten distinguishes (inspired by Odera Oruka) four forms of philosophy. I reproduce two of them here:

  1. Ethnophilosophy: Here it is assumed that different cultures often have incommensurable conceptions and worldviews. Bioethical key concepts – personhood, rationality, autonomy, consent, human nature, human well-being – have as many interpretations as there are cultures. The aim seems to be to develop these interpretations of Western ethical concepts and principles, to develop culture specific “ethnobioethics.”
  2. Professional philosophy: Professional philosophers, says Hellsten, are academically trained in critical, impartial, logical argument. (She distinguishes professional philosophy from the ideological tendencies of Peter Singer and John Harris). Although professional philosophers are influenced by their culture, they can recognize these biases and subject them to self-critical examination. Professional philosophy is self-correcting.

Hellsten points out that ethnophilosophical thinking, in its quest to carve out culture specific “ethnophilosophies,” on the contrary tends to make sweeping generalizations about cultural views, creating false oppositions. Moreover, ethnophilosophical thinking is at risk justifying double standards in biomedical practices. It can make it seem reasonable to ask for individual consent in individualistic cultures but not in collectivist.

Hellsten suggest that what global bioethics needs is professional philosophy. It can impartially scrutinize arguments and reveal contradictions and unclear thinking, and it can keep ethics at arm’s length from politics and rhetoric. It is a universal form of human thought that should be accessible to all cultures. Through professional philosophy, global bioethics can become universal bioethics.

What do think about this? I believe that Hellsten’s emphasis of “universality” does not quite strikingly describe the point I think she actually has. In order to understand in what sense she has a point, I believe we need to understand that bioethics is not only as a form of “thinking,” but also a concrete component of contemporary social structure.

Law (to take another example) isn’t just a form of “thinking” but also an organized part of the social structure: a legal system. During the twentieth century, we saw the birth of bioethics as another part of the social structure: as an organized way to deal with certain issues of health care and biomedical research (other parts of the social structure). Bioethics therefore has an obvious place in the social structure, and that place is: the university, with its resources for research and education.

So where do I locate Hellsten’s point when she claims professional philosophy’s role in global bioethics? Not in the view that professional philosophy supposedly is “universal thinking,” but in the fact that the university is the place of bioethics in the social structure. If we build hospitals and invest in advanced medical research and education, and if we develop legislation for these activities, it is in the university that bioethics finds the resources it needs to play its role.

So why is “professional philosophy” relevant for bioethics in Africa? In my view, precisely because one builds hospitals and makes investments in medical research and education. It would be odd if the efforts to build such a society were combined with an emphasis on tradition-bound “ethnophilosophy.”

We need to be clear about where we are: in the midst of an ongoing construction of society. And we need to be clear about the fact that ethics, in addition to being a personal concern, also has become an important “apparatus” in the social structure. In Africa, and elsewhere, it will certainly be faced with unique bioethical issues, like the legal system is faced with unique problems in different parts of the world.

At the same time, it is important to emphasize, as Hellsten does, the open and self-critical nature of global bioethics.

(I want to thank the Global Bioethics Blog for drawing my attention to Hellsten’s article.)

Pär Segerdahl

This post in Swedish

We think about bioethics : www.ethicsblog.crb.uu.se


Online course in research ethics, spring 2016

January 27, 2016

Pär SegerdahlAnyone who manages research also needs to be able to reflect on research. Not only the researchers themselves, but also funding bodies, journal editors, members of research ethics committees, administrators, journalists, organizations, politicians, and others.

How do you act if you suspect research misconduct, and what is it? What are the ethical and legal regulations governing data management or research on humans and animals?

If you want to learn more about these issues, or perhaps about publication ethics and authorship rules, conflicts of interest, mentor/trainee responsibilities, biosecurity and more – then we can help you. We give an online course in research ethics for medicine and the life sciences.

The course runs for ten weeks, from April 4 to June 10, every week with its own theme (the last week is devoted to sharing what you learned with your home institution). The course includes video lectures and texts to read, but also interactive exercises and regular e-meetings with other students and with the teacher.

The course is given in English and is open to students from all over the world. If you want to know what some of the former students have to say about the course, you can read more here. And if you want to know who the course is aimed at, read more here.

Research ethical responsibility is vital and it is important that ethics education reaches out. The course fee is € 1.125 (including tax), and to students who cannot receive financial support from their home institution we offer a limited number of scholarships for which application deadline is February 15.

If you don’t need a scholarship you can apply for the course until course start.

Pär Segerdahl

This post in Swedish

We care about education


Fourth issue of our newsletter about biobanks

December 22, 2015

Now you can read the fourth newsletter this year from CRB and BBMRI.se about ethical and legal issues in biobanking:

The newsletter contains three news items:

  1. Moa Kindström Dahlin describes the work on ethical and legal issues in the European platform for biobanking, BBMRI-ERIC, and reflects on what law is.
  2. Josepine Fernow features two PhD projects on research participants’ and patients’ preferences and perceptions of risk information.
  3. Anna-Sara Lind discusses the ruling of the European Court of Justice against the Safe Harbour agreement with the United States.

(Link to PDF version of the newsletter)

And finally, a link to the December issue of the newsletter from BBMRI.se:

Merry Christmas and a Happy New Year!

Pär Segerdahl

We recommend readings - the Ethics Blog


Open data access is regulated access

November 11, 2015

Pär SegerdahlWe usually associate open access with the publication of scientific articles that anyone with internet access can read, without price barrier.

The concept “open access” is now being used also for research data. I have written about this trend towards open data earlier on the Ethics Blog: Openness as a norm.

In many cases, research data are made as freely available as the open access articles that anyone can read; often in connection with the publication of results based on the data. This occurs, for example, in physics.

There is a strong trend towards open data also in medical research; but here the analogy with articles that anyone can read is no longer valid. Biobank and register-based research work with sensitive personal data, to which a number of laws regulating data access apply.

Yet one could speak of a trend towards open data also in this domain. But it then means something different. It’s about making data as accessible as possible for research, within the regulations that apply to this type of data.

Since the relevant laws and ethical frameworks are not only opaque but also differ between countries, the work is largely about developing common models for researchers to work within. One such attempt is made in an article by, among others, Deborah Mascalzoni and Mats G. Hansson at CRB:

The article formulates 15 principles for sharing of biological samples and personal data between researchers. It also includes a template of the written agreements that scientists can make when one research group transfers data or materials to another research group.

Take a look at these principles, and the template of the agreements, and you’ll soon get an idea of how many strict conditions that must be met when biological samples and personal data are shared for research purposes.

Given how open access often is associated with the possibility for anyone at any time to read articles without price barrier, one should perhaps avoid using the term in this context. It may mislead, since this form of data access is heavily regulated, although the aim is to support researchers to share their data and samples.

Pär Segerdahl

This post in Swedish

Minding our language - the Ethics Blog


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