A blog from the Centre for Research Ethics & Bioethics (CRB)

Tag: integrity (Page 3 of 3)

Handling mistaken trust when doctors recruit patients as research participants

Patients seem more willing to participate in biobank research than the general public. A possible explanation is the doctor-patient relationship. Patients’ trust in health care professionals might help doctors to recruit them as research participants, perhaps making the task too easy.

That trust in doctors can induce a willingness to participate in research seems threatening to the notion of well-informed autonomous decision making. Can sentiments of trust be allowed to play such a prominent role in these processes?

Rather than dismissing trust as a naïve and irrational sentiment, a new article distinguishes between adequate and mistaken trust, and argues that being trusted implies a duty to compensate for mistaken trust.

The article in Bioethics is written by Linus Johnsson at CRB, together with Gert Helgesson, Mats G. Hansson and Stefan Eriksson.

The article discusses tree forms of mistaken trust:

  1. Misplaced trust: Trusted doctors may lack relevant knowledge of biobank research (for example, about the protection of privacy).
  2. Irrational trust: Patients may be mistaken about why they trust the doctor (the doctor may actually be a form of father or mother figure for the patient).
  3. Inappropriate trust: Patients may inappropriately expect doctors always to play the role of therapists and fail to see that doctors sometimes play the role of research representatives who ask patients to contribute to the common good.

The idea in the paper, if I understand it, is that instead of dismissing trust because it might easily be mistaken in these ways, we need to acknowledge that being trusted implies a duty to handle the potentiality of mistaken trust.

Trust is not a one-sided sentiment: it creates responsibilities in the person who is trusted. If doctors take these responsibilities seriously, the relationship of trust immediately begins to look… well, more trustworthy and rational.

How can mistaken forms of trust be compensated for?

Misplaced trust in doctors can be compensated for by developing the relevant expertise (or by dispelling the illusion that one has it). Irrational trust can be compensated for by supporting the patient’s reasoning and moral agency. Inappropriate trust can be compensated for by nurturing a culture with normative expectations that doctors play more than one role; a culture where patients can expect to be asked by the doctor if they want to contribute to the common good.

If patients’ trust is seen in conjunction with these corresponding moral responsibilities of doctors, the relationship of trust can be understood as supporting the patients’ own decision making rather than undermining it.

That, at least, is how I understood this subtle philosophical treatment of trust and its role when patients are recruited by doctors as participants in biobank research.

Pär Segerdahl

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Research before health care

Last week I blogged about the unique status that personal data have in science. Researchers are not interested in the persons behind the data and they have no intention of returning to them; an intention that most other personal data collectors have.

In an age of increasing integrity threats, it is uplifting that biobanks and research registers function like depersonalized scientific spaces where our data can orbit between research projects without tendency to return to us and disturb us.

Scientific aims disentangle us from our data.

Simultaneously with my blogging on this topic, Mats G. Hansson here at CRB wrote a letter to Nature on almost the same subject.

Nature recently reported on recommendations to US biobanks to inform participants about medically relevant incidental findings about their DNA. Mats G. Hansson warns that following such recommendations would be irresponsible.

Genetic risk information is highly complex. It is often unclear what the discovery of a particular genotype variant actually says about an individual’s disease risk. And even if increased disease risk can be proven, further research is needed to ascertain which preventive measures would be efficient.

Research must be allowed run ahead of attempts to provide (what looks like) health care services. Reporting incidental findings that have not been validated “could be putting the cart before the horse,” Hansson warns.

Making sure that biobank research runs ahead of (what looks like) health care services has one further function. It sustains the depersonalized status of personal data in research.

I believe this is important when data protection legislation is about to be sharpened to meet new perceived integrity threats. Research might be unduly affected by the new legislation, especially if the unique status of personal data in research is not clear.

When authorities share personal data, the aim typically is to be able to return to individuals with these data – perhaps in court. It is in the nature of scientific data sharing, however, that the individuals behind the data are uninteresting and are not included in the purpose of the data sharing.

Biobank infrastructure is very much about facilitating scientific data sharing. If these infrastructures are well-built, they can serve as reassuring examples in times where integrity threats are assumed to hide behind every corner.

People could then say: “There actually are depersonalized spaces where personal data can circulate safely without burdening the persons behind the data. They are called biobanks.”

Pär Segerdahl

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Research with my data, but not about me

It is perplexing how the websites of large internet companies continuously adapt to me. It looks like the entire business activity of Amazon was about the musical artists I listened to yesterday.

These companies evidently collect data about what I search out on their websites and automatically adapt to my computer, making the presentation of products as attractive as possible to me.

It is rather annoying to get one’s own internet history in the face like that.

The example illustrates a common property of personal data. When data about me are collected, the data sooner or later return to me: in the form of an adapted website; in the form of a demand to pay tax arrears; or in the form of more expensive insurance premiums.

No one would bother to collect my data if they did not intend to return to me on the basis of the data.

Me, me, me: my data are about me. Sooner or later they come back to me.

There is, however, one brilliant exception from my data’s stubborn tendency to return to me: research. When researchers collect my blood sample or ask questions about my health, they are not interested in my person. My data will not return to me in any form.

Researchers are interested in general patterns that can be discerned in data from thousands of people. If researchers should return to participants, it is to collect further data that (for example) can make the patterns of ageing appear.

Patterns, patterns, patterns: research is about patterns. It is not about any one of us who supplied the data.

I’m therefore inclined to see research registers as categorically distinct from the tax authorities’ data about my incomes. Researchers launch my data up into a depersonalized scientific space. Up there, my data hover weightlessly and my person cannot attract them back to me. They do research with my data. But it is not about me.

I don’t primarily have in mind the fact that researchers code my data so that the connection to me is obscured. I’m thinking of the elementary fact that they collect my data without any intention of returning to me on the basis of the data.

When the integrity of research participants is debated, it is important to keep this unique status of research registers in mind. The purpose of collecting scientific data about me is not at all about me. The purpose “scientific research” disentangles me from my own data.

Biobank research here encounters a difficulty.

Suppose that researchers discover in my blood sample a genetic disposition for a disease that can be prevented if measures are taken in advance. Should they then take down my data from their depersonalized orbit in scientific space, and inform me about the disposition?

It may seem obvious that they should inform me. But it would simultaneously be a departure from how science typically treats personal data without intention of returning to participants on the basis of the data.

How should biobank researchers handle discoveries about individual participants that may save their future health? This important and difficult question will be investigated in the dissertation work of our most recent doctoral student at CRB, Jennifer Viberg.

I’m certain that the Ethics Blog will return many times to Jennifer’s work on incidental findings in biobank research.

Pär Segerdahl

We like challenging questions - the ethics blog

The Swedish government announced new rules for research registers

Will new Swedish rules for research registers enable LifeGene to continue?

In December 2011, the Swedish Data Inspection Board (DI) decided that the large biobank investment LifeGene is against the law.

In its motivation, DI focused on the purpose of the data collection and the information to participants about this purpose. According to DI, LifeGene’s purpose – “future research” – is too unspecific to be in accordance with the Personal Data Act.

Yesterday (February 28), the Swedish government announced new rules for research registers. These rules are supposed to enable LifeGene to continue. If you read Swedish, you might want to study the government’s press release.

I am not a legal expert, but it seems to me that even if the government’s new rules can make LifeGene lawful as a research register, other laws become relevant when the register is being used in research… for example, the Personal Data Act, surveyed by DI.

I happen to believe that LifeGene’s purpose can be interpreted as being sufficiently specific even for the demands of the Personal Data Act. LifeGene does not bluntly state “future research” as its purpose, but specifies the kind of diseases that will be studied, as well as the goal of creating new tools to prevent, diagnose, and treat these diseases.

Karolinska Institutet (that administers LifeGene) has appealed against DI’s decision to stop LifeGene. If DI does not withdraw its decision, my uncertain layman guess is that the result of this legal process might still be relevant for the possibility of continuing LifeGene as planned.

Pär Segerdahl

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Blood samples to be destroyed in Minnesota

Privacy concerns and public health endeavours sometimes clash with each other.

A recent example comes from the state of Minnesota.  After a ruling from the state’s supreme court, one has begun to destroy blood samples taken routinely from newborns in  a screening program. The practice is seen as a violation of privacy, since consent was not obtained first.

Read more in Science, News of the Week.

Pär Segerdahl

Henrietta Lacks and the power of rhetoric

Paradoxically, the victim can have the most powerful position, namely, as a “rhetorical figure.”

I sense this rhetorical power in Rebecca Skloot’s bestselling book, The Immortal Life of Henrietta Lacks. I think less freely under the spell of this rhetoric. My thoughts are not allowed to discover new aspects of things. Questions are being silenced and the direction of my “reasoning” is predestined.

Who dares to be scrutinizing in the confrontation with the tear-jerking language that occurs on the author’s website for the book? This could be the lyrics of a whole genre of sad songs.

We read and write about Henrietta Lacks as if we were spellbound.

The most spellbound of all seem to be the reviewers of the book. Many excel in morbid presentations of a both dead and living body abducted by science; of a poor black woman who anonymously “paid the price” for a whole series of profitable medical discoveries and innovations.

Who wouldn’t yield to the temptation?

As a result, however, obvious questions are silenced. For example: Is it not wonderful that she was anonymous (until the publication of the bestseller)? Is it not splendid that scientists speak of “HeLa cells” and not about “Henrietta Lacks’ cells”? Wasn’t her integrity protected that way (until the publication of the bestseller)?

We don’t know how Henrietta Lacks would have described her destiny. Would she describe herself as a victim of science (rather than as a victim of cancer, for example)? Or has she become one of the most recent victims of the enchanting rhetoric of the victim?

(I wish to thank Joanna Forsberg for inspiration. A comment of hers on our Swedish Etikbloggen helped break the spell for me and gave birth to this post.)

Pär Segerdahl

The temptation of rhetoric - the ethics blog

Australians want to biobank

Creating biobanks for future research is sometimes debated as if such investments seriously threatened sample donors’ integrity.

In Sweden, the Data Inspection Board even decided that it is against the law to collect biological samples and personal health data “for future research.” Participants cannot give their consent to anything that vague, they argued.

This distrustfulness may be out of touch with public perceptions, however, judging from a recent Australian study. The Australian researchers report “a high level of trust in university biobanks” and “a strong willingness to participate in biobank research.”

Don’t people know one cannot trust anything that vague?

Pär Segerdahl

We like challenging findings - The ethics blog

Debate on changes to the European Data Protection Directive

In the December issue of the European Journal of Public Health, two groups of researchers present opposed views on planned changes to the European Data Protection Directive.

One group welcomes a harmonization of data protection rules across Europe, provided that new technologies to protect identities are implemented. Their basic idea seems to be that harmonization facilitates data sharing, and thereby research. So go for harmonization, if the required privacy protecting technologies are put in place.

The other group sees the suggested identity protecting technologies as a threat to epidemiological research. Anonymized or pseudonymized data do not allow researchers to trace complex interactions between life-style, preventive interventions, treatments and outcomes. The harmonization may facilitate data sharing, then, but the technical preparation of the data will be cumbersome, and the data become useless for many important research purposes. So avoid harmonization, if it hinders public health research.

The background to the debate – as I understand it – is the double aim of the harmonization: to facilitate data sharing across borders while simultaneously enhancing the protection of privacy. Individuals have a right to abstain from participating in research. Participation requires that they give informed consent.

A harmonization that demands consent for epidemiological research from each sample or data provider each time a new project uses the data is seen by both groups as a threat to much public health research. Thus one group suggests privacy protecting technologies to avoid the requirement of informed consent. The other group suggests that current national exemptions from the principle of consent work well, with no reported breaches of privacy. And it enables the research that the privacy protecting technologies hinder.

Read the two articles and the editorial, and reflect on where the essence of the problem lies. My view is that the relevant ethical question to consider is whether (or in what sense) we are research participants when our already given samples or data are used in epidemiological research.

Pär Segerdahl

We follow debates : The Ethics Blog

Integrity of anonymous donors

In a comment on our Swedish blog (Etikbloggen), Joanna Forsberg asks if her integrity can be breached if a sample that she donated to a biobank is anonymized (so that it cannot be traced to her) and then is reused in new biobank research. Since the sample is not traceable to her, no one can approach her and ask for consent.

I will probably return to this question. I’m inclined to view an anonymized biological sample as a datum of humankind. A coded sample can become a datum of a specific individual, namely, if the code key is employed so that the donor is traced. The anonymous sample, however, cannot even become sample of “me,” since there is no code key. There is only some tissue and general information, like “male, 48 year old.” It does even not make sense, I want to say, then, to talk about my integrity in relation to anonymous samples.

I notice here that my reasoning is a little bit like that of an experimenter talking about what he or she wants to measure in the laboratory. But is my integrity like an experimental variable? Should bioethicists reason as if ethics was an experimental science?

Pär Segerdahl

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

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