What do donors need to know about future research?

July 22, 2012

I’m reading a Scientific American Guest Blog, on the ethics of future-use DNA sampling. Donating DNA to research is described as a more lasting donation than donating organs or embryos: DNA is information and information can last longer.

That donating DNA is such a lasting donation seems to imply that the future use to which the DNA can be put to use is more open. Who knows what information future researchers might be able to obtain from DNA donated today?

The author of the guest blog, Ricki Lewis, asks how consent can be obtained for DNA sampling intended for future genetic research.

She rejects the view that researchers must know in advance where the research might lead and inform donors about it; and if research takes unforeseen directions years or decades after the donation, researchers must contact donors again for renewed consent.

This view is rejected because knowing where research might lead “is not how science works.” And renewed consent would be “confusing, disturbing, and likely expensive.” – I agree.

Ricki Lewis’s own solution is the following:

  • “…informed consent documents should state that the sample might be used in the future to get information unknown today. Participants or patients can agree, or not sign.”

Both solutions seem to operate on a level that strikes me as less relevant to DNA donors.

People who donate DNA to science probably want to contribute to research that can improve prevention, diagnosis and treatment of various diseases. That is the level at which they are concerned about the future use of their DNA: the level of the practical significance of the research.

The exact scientific path that future research takes is less relevant to donors, I believe, as long as the research has the kind of practical significance that motivates their donation. And to ask for consent to do science as science is done – without knowing in advance where it might lead – could be confusing.

I also wonder: could a consent form that emphasizes the open and unpredictable nature of scientific research be misused on the practical level that probably concern donors more?

Pär Segerdahl

Approaching future issues - the Ethics Blog

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Do I have a self?

May 25, 2012

Viewing neuroscience as a box opener is tempting. The box conceals the human mind; opening the box reveals it.

According to this image, neuroscience uncovers reality. It lays bare the truth about our taken for granted notions of mind: about our concepts of ‘self,’ ‘will,’ ‘belief,’ ‘intention’… Neuroscience reveals the underlying facts about us humans.

How exciting…, and how terrifying! What will they find in the box? And what will they not find? Will they find my ‘self’ there – the entity that is me and that writes these words?

What if they don’t find my ‘self’ in the box! What if my ‘self’ turns out to be an illusion! Can they engineer one for me instead? My life would be so desolate without ‘me.’

But neuroscientists are clever. They control what’s in the box. They surely will be able to enhance my brain and create the ‘self’ that didn’t exist in the first place.

Ideas like these are discussed in a mind-boggling interview entitled,

What strikes me about the neurophilosophical discussion is that it does NOT question the notion of the self. The notion is discussed as if it were self-evident to all of us, as some sort of ‘entity.’ The notion is supposed to be present in ordinary (culturally shaped) self-understanding. What is lacking is the evidence for the notion of ‘the self.’

You’ve guessed where the evidence is hiding: it’s in the box!

Neuroscientists opening the box threaten to disclose that the brain is naked. It might not be garmented in a ‘self’ or in a ‘free will.’ That these ‘entities’ exist in the box were perhaps just illicit reifications of modes of speech present in everyday discourse.

But what is ‘reification’?

Is it not precisely the image of ‘the box’ concealing the realities of mind?

If the tempting ‘box’ image supplies the model of reification – the very form of reification – isn’t the notion that neuroscience, by opening the box, is exposing reifications in ordinary discourse a whirling dance with the same reifying tendency that it is supposed to expose?

The ‘box’ mode of thinking is a simplified use of psychological nouns and verbs as if they referred to ‘entities’ and ‘processes’ in a hidden realm. It is difficult to resist such simplified linguistic imagery.

I’m convinced that neuroscience is making important discoveries that will challenge our self-understanding. But I question the ‘box’ image of these developments as an oversimplification of the very modes of speech it makes it seem we can transcend.

Pär Segerdahl

Minding our language - the Ethics Blog

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Interactive conference seeks the value of biobanking

April 20, 2012

I have the privilege of belonging to a group of ethicists and law scholars that currently discuss how to visualize ethical and legal dimensions of biobanking.

We organize an interactive part of the scientific conference program for HandsOn: Biobanks in September. The conference invites participants to Uppsala to explore the values of biobanking and to take part in its interactive exhibition.

Biobanking is hot in medicine. There are hopes that it will substantially improve diagnosis, treatment and prevention of widespread as well as rare diseases. At the same time, however, the route to such values is difficult to survey, and the goals of large biobank investments are not always entirely transparent.

HandsOn: Biobanks is an ambitious attempt to explore and visualize the values of biobanking and the path towards them.

The conference asks: What are the values sought after? How can they be achieved in practice? There are the ethical, legal, scientific and commercial challenges, but there are also challenges for the industry. How can biobanking affect public trust in medical research and industry?

The conference combines keynote presentations with idea labs and educational sessions. The interactive part of the conference where I participate is called “the Route.” It follows the research process from ethical review, consent, sampling, storage and analysis, to end results that hopefully add value in ethics and trust, in clinical practice, in health economy, and in drug development.

If you want to participate in this interactive conference and help us better understand the values of biobanking, or simply are curious to see how we manage to solve the tricky problem of visualizing ethical and legal aspects – keep these dates in mind:

We are in the midst of brainstorming “the Route.” I hope that future blog posts can share with you some of the ethical and legal issues that we want to visualize and make accessible to participant interaction.

Registration is open – hope to see you in September!

Pär Segerdahl

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UK Biobank invites researchers

April 13, 2012

After many years of data collection, UK Biobank is now open for research on human health and disease.

Like the Swedish biobank investment LifeGene, the British investment is big and prospective. Blood and urine samples were collected from 500 000 participants aged 40-69. Participants also underwent medical examinations and answered questions about health, disease and lifestyle.

The news is that researchers can now start planning projects using these data. Nevertheless, it will probably be a long time before interesting findings are reported…

It may seem cynical, but before UK Biobank can support valuable research, sufficiently many participants must develop various diseases, while others remain healthy. This is what will allow researchers to go back to the original data and identify patterns in how genetic and environmental factors contribute to health and disease.

The value of biobank infrastructure, like UK Biobank, increases with time, as participants develop cancer, depression, diabetes, or heart disease… while others remain in good health.

The fact that biobank infrastructure initially has unclear scientific value and reveals its potential only with time tends to invite skepticism. In the UK as well as in Sweden, investments in biobank infrastructure were interpreted by some as if they concerned unusually obscure research projects, lacking proper scientific goals and procedures.

I think that this is a misunderstanding.

As the recent opening of UK Biobank shows, it is not until now that clearly defined research projects can start being planned. If I am right, however, we might even have to wait somewhat longer…

The data collected between 2006 and 2012 might not support much interesting research until 2022, if I understand the temporality of these research processes. Since the research concerns health and disease in ageing humans, the significance of the research cannot develop any faster than humans grow older.

Rather than holding the initial lack of scientific prosperity against investments like UK Biobank or LifeGene, I am struck by the patience and foresightedness of those who planned and decided about these investments.

Understanding the infrastructural preconditions of biobank research seems to require an attitude to the pace of human life that I thought had become extinct in an age obsessed with short-term agendas.

Sometimes, we have to wait for the future to reveal itself. Only when the time is ripe can the goals and procedures of scientifically interesting biobank projects be defined.

Pär Segerdahl

Approaching future issues - the Ethics Blog

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