Commercialization, but not at any price

February 14, 2017

Pär SegerdahlIn a previous post, I tried to make the point that the pharmaceutical industry can support altruism between research participants and patients, despite the fact that the industry itself is not altruistic but is driven by profit. Medical research will not benefit patients, unless results are developed into commercially available treatments.

However, this presupposes, of course, that pricing is reasonable, so that we can actually afford the drugs. Otherwise, research and research participation become meaningless.

Today, I just want to recommend an article in the journal Cell, where the authors argue that the prices of new cancer drugs have become indefensibly high. They propose new collaborations between academic researchers and small companies, to offer cancer drugs at more reasonable prices. Researchers should ensure that the companies they work together with are willing to sell the drugs with smaller profit margins.

You can find a summary of these ideas in The Guardian.

Pär Segerdahl

Workman, P. Draetta, G. F., Schellens, J. H. M., Bernards, R. (2017). How much longer will we put up with $100,000 cancer drugs? Cell 168: 579-583.

This post in Swedish

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Genetic screening before pregnancy?

June 20, 2016

Pär SegerdahlGenetic diseases can arise in strange ways. So-called recessive diseases require that both parents have the gene for the disease. The parents can be healthy and unaware that they are carriers of the same non-dominant disease gene. In these cases, the risk that the child develops the disease is 25 percent.

In families with a history of some recessive disease, as well as in communities where some serious recessive disease is common, genetic screening before pregnancy is already used – to determine whether couples that are planning a child are, so to speak, genetically compatible.

As these genetic tests have become more reliable and affordable, one has begun to consider offering preconception genetic screening to whole populations. Since one doesn’t know then exactly which genes to look for, it’s not just about screening more people, but also about testing for more recessive traits. This approach has been termed expanded carrier screening (ECS).

In the Netherlands, a pilot project is underway, but the ethical questions are many. One concerns medicalization, the risk that people begin to think of themselves as being more or less genetically compatible with each other, and feel a demand to test themselves before they form a couple and plan children.

Sweden has not yet considered offering expanded carrier screening to the population and the ethical issues have not been discussed. Amal Matar, PhD student at CRB, decided to start investigating the issues in advance. So that we are prepared and can reason well, if preconception expanded carrier screening is suggested.

The first study in the PhD project was recently published in the Journal of Community Genetics. Interviews were made with clinicians and geneticists, as well as with a midwife and a genetic counselor, to examine how this type of genetic screening can be perceived from a Swedish health care perspective.

Ethical issues raised during the interviews included medicalization, effects on human reproductive freedom, parental responsibility, discrimination against diseased and carriers, prioritization of resources in health care, as well as uncertainties about what to test for and how to interpret results.

The study serves as an empirical exploration of the ethical issues. Some of these issues will be examined philosophically further on in Amal Matar’s project.

(Read more about Amal Matar and her work at CRB here.)

Pär Segerdahl

Matar, A., Kihlbom, U., Höglund, A.T. Swedish healthcare providers’ perceptions of preconception expanded carrier screening (ECS) – a qualitative study. Journal of Community Genetics, DOI 10.1007/s12687-016-0268-2

This post in Swedish

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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

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Online research ethics: A pedagogic challenge

May 19, 2015

Stefan ErikssonResearchers, scientists and professionals who are somehow involved in research, need to develop an ability to detect ethical problems. But we also need to learn how to do something about them. – How can we learn?

The Centre for Research Ethics & Bioethics (CRB) has developed a web-based training in research ethics. And now we are looking forward to a pedagogic challenge!

Research ethics is not only following rules and regulations. It is also about training your ethical competence. We have decided to use a new approach: a web based training that requires commitment from both teacher and student.

We emphasize interactivity. Research ethics is about learning from history and understanding how norms affect what we do. But research ethics is also about reflecting on your own attitudes and actions. This is why we believe that talking with others is important. We have added e-meetings to the training where we give every participant opportunities to discuss research ethical problems. In addition, every lesson has a theme and we use chatrooms to discuss related cases.

Last term we tested this concept on participants from Europe, Egypt and Singapore. Now it is time to launch our training and open it for participants from all over the world. Our aim is high: We want to offer the most complete, updated end enjoyable training you can imagine!

Online distance training has some advantages in itself: It is flexible for the student, relatively cheap and there are good opportunities to have individual support for your studies. Add the possibilities that a modern, digital learning environment can offer: video films that can be interactive, e-meetings, quizzes, TED lectures, discussions in chat rooms and more offer opportunities for both variety and having fun, learning and reflection on several different platforms. Sites that allow users to try randomizing participants in a study can create a greater understanding of how it is done rather than just reading about it. We collect all these resources in one place for students to reach whenever they want. This way, the focus is on students learning instead of teaching.

Having students from different backgrounds adds strength to the training, but it is also a challenge. An important aspect is to try and capture the different experiences and circumstances they bring to the course. Coming from different cultural environments, they will meet different challenges when they try to implement an ethical stance in their work. Participants can learn a lot from each other and increase their understanding of the conditions that other’s work under. But positions and traditions can also seem difficult to understand, or hard to put forth to others.

Online research ethics training for medicine & the life sciences - Centre for Research Ethics & Bioethics (CRB)Distance learning risks creating a situation where some participants are unable to take responsibility for their studies and hesitate to ask for help. Creating a positive, allowing atmosphere is not something that can be realized through the design of tasks or user interfaces (although those things matter too). It is something that you convey by the way to act towards others. There is a challenge for the teacher here: trying not to inhibit the student’s activities, or ending up on the outside of the group’s dynamic and development.

As a teacher, you soon realize that you have to work hard on both content and form. A difficulty is balancing the student’s freedom to plan the work to fit a schedule (that is probably quite busy already), with the aim to have interactive parts of the training that everyone has to be there for: both in time and progress. During the pilot it became obvious that students found it hard to follow the common time plan.

In the end, when people from different places can meet each other in a learning environment, exciting opportunities present themselves. One course can mix traditional teaching with different pedagogic models and technology. The challenge lies in finding a balance between the focus the training needs and the freedom that is so appreciated, and between structure and the endless pedagogic possibilities that this format offers. For the teacher, the task becomes to organize and guide students on the different paths that move them along in their individual learning processes. A challenge that I find both enjoyable and important!

Want to try it? Go to www.ethicstraining.crb.uu.se

Stefan Eriksson

We care about education


Learning ethics online

November 26, 2014

Stefan ErikssonAs you read this, PhD students, researchers and professionals from Egypt, Singapore, Germany, Italy and Sweden are busy discussing publication ethics online. Next week the topic is situations where research results can be used to harm. They are trying a new kind of online research ethics training. The idea is to give them hands-on knowledge and a sense of responsibility. But can you do that online?

The hope is of course that the feeling of responsibility stays with you after you have completed the training and can be mobilised if and when you run into an ethical dilemma. The goal of any ethics training, whether online or in a classroom, should be to help the participants to become better at reflecting on their own pre-conceptions and values. And learn to put those in relation to research ethical dilemmas. In the long run, we believe this is how you can help the scientific community to uphold research integrity.

There is increasingJosepine Fernow demand on research ethics training from funding agencies and universities. At the Centre for Research Ethics & Bioethics we decided to challenge ourselves to make good training available to everyone who needs it, regardless of where they are in the world. As we write this, both of us, Stefan Eriksson and Josepine Fernow, are part of an exciting journey as teacher and student. Right now the first pilot version of the course is running and we are able to see for ourselves if it is possible to meet that goal online.

For Stefan, as developer and teacher, the aim has been to create a course that is both fun and interactive, and where everything you need is available in one place. The main driving force behind our decision to create this course came from the funding agencies. The US National Institutes of Health has raised a demand for formal training from everyone who applies for funding for research on humans. But most of the online courses available are not interactive enough and doesn’t meet their demands on content. We decided to rise to the challenge and it turns out an online course can be much more interactive than you might think at first glance.

What are the upsides to online training? For Josepine, as a student, of course there is the practical side to being able to work at your own pace. And it is convenient to have everything you need to read, watch and do available freely on the Internet. With this course it turns out it was possible to get the advantages of an online course without losing out on interaction with other participants. The discussion format to some extent also forces you to formulate and express your opinion. That isn’t always the case in a classroom full of other students.

The course is made to fit everyone from graduate student to senior researcher. It works for professionals and officials from funding agencies and research ethics committees and everyone else who needs to be aware of and handle research ethics in one form or the other. In the pilot training we are running now it has become clear that there are only advantages to having a broad range of students. The fact that the people in the course have different backgrounds and nationalities adds a bonus: Discussing with people with different roles in different organizations, from different countries, with different cultures, and different regulatory systems serves to show that at the end of the day, we are all just people. And as people, we need to be able to mobilise our sense of responsibility when faced with research ethical dilemmas.

Stefan Eriksson, Associate Professor of Research Ethics

Josepine Fernow, Co-ordinator


Nurses’ experiences of do not resuscitate orders

June 18, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogWhen a critically ill patient has such a poor prognosis that resuscitation would be of no use, doctors can write a so-called do not resuscitate order. The decision means that if the heart stops beating, the medical team should not, as otherwise, perform coronary pulmonary rescue.

The decision is made by the physician on the basis of a medical assessment. But the decision affects the patient, the relatives, and the nurses who care for the patient and family.

Mona Pettersson at CRB is writing her thesis on the decision not to resuscitate. In a study recently published in Nursing Ethics, she interviewed 15 nurses about their experiences of do not resuscitate orders at Swedish hematology and oncology departments.

The nurses describe problems that may arise. The nurses have daily close contact with patients and notice when they are no longer responding to treatment. The nurses can then expect a do not resuscitate order, which may not always come. The decision may be taken by the doctor on the spot, when a resuscitation attempt already started. Sometimes decisions are unclear or contradictory: decisions are taken while continuing to give the patient full treatment. And if the patient and family are not informed about the decision, or the nurse is not present when the information is given, it becomes difficult for the nurse to care for the patient and family – for example, to answer questions afterwards.

Mona Pettersson concludes that nurses need clear, well-documented orders. Patients and families need to be informed and involved in the decisions, and nurses should be present when the information is provided. Finally, regular ethical discussions between nurses and doctors are needed, to understand each other and the different perspectives on do not resuscitate orders. Here you find a link to the article:

Co-authors are Mariann Hedström and Anna Höglund.

Before I finish this post, I want to mention a recently made compilation of our research on nursing ethics:

There you will find our publications with abstracts and links to the publications that are available online.

Pär Segerdahl

We have a clinical perspective : www.ethicsblog.crb.uu.se


Open biobank landscapes

May 14, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogLast week I wrote about the transition from organizing science as a tree of knowledge that once in a while drops its fruits onto society, to organizing research as part of knowledge landscapes, where the perspective of harvesting, managing and using the fruits is there from the beginning.

That the proud tree is gone might seem sad, but here we are – in the knowledge landscape, and I believe the development is logical. As a comment to the previous post made clear, many fruits fell from the old tree without coming into use.

The notion of knowledge landscapes sheds light on the attempt by BBMRI.se to build infrastructure for biobank research. The initiative can be viewed as an attempt to integrate research in broader knowledge landscapes. Supporting research with an eye to the interests of patients is a new way of managing research, more oriented towards the fruits and their potential value for people than in the era of the tree of knowledge.

The novelty of the infrastructural approach to biobanking isn’t always noticed. In Sweden, for example, the biobank initiative LifeGene was met with suspicion from some quarters. In the debate, some critics portrayed LifeGene as being initiated more or less in the interest of a closed group of researchers. Researchers wanted to collect samples from the population and then climb the tree and study the samples for god knows which purposes.

Those suspicions were based on the old conception of science as a high tree, inaccessible to most of us, in which researchers pursue “their own” interests. The aim with LifeGene, I believe, is rather to integrate research in a knowledge landscape, in which research is governed more by the interests of patients.

We mustn’t underestimate the challenges such a reorganization of research has to deal with, the forces that come into play. I merely want to suggest a new way of surveying and thinking about the transition – as a change from approaching science as a high tree of knowledge to integrating research in open knowledge landscapes.

If you want to read more about research in knowledge landscapes, you find Anna Lydia Svalastog’s article here, and the network where these ideas originated here.

In September 2014, the third conference, HandsOn: Biobanks, is organized, now in Helsinki. Academics, industry, doctors, patient groups, policy makers, public representatives and legislators are invited to share knowledge and experiences. As in previous conferences in the series, there is an interactive part, The Route, in which biobanking processes can be followed from start to finish, with ample opportunities for discussion.

View the conference as part of maintaining open biobank landscapes, with research as one of several integrated components.

Registration is open.

Pär Segerdahl

We like broad perspectives : www.ethicsblog.crb.uu.se


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