Facts and values in students’ reasoning about gene technology in the frame of risk – a thick comprehension

Figures & data

Table 1. Documented teaching activities according to six steps in the teaching activity.

Teaching activity	Time slot (mins)	Documentation
Introduction: Genetic engineering, concepts and methods	60 + 2 × 80	Notes by the researchers
Risk concept and risk matrix Method for value-clarification exercise		Video recording
Group work: Preparation of value-clarification exercises by students	3 × 60	Notes by the researchers
Student-led value-clarification exercises: See Table A1	3 × 120	Video and audio recording
Summary lesson: Additional facts and multiple-choice test	60 + 30	Notes by the researchers

Figure 1. Number of language games represented in each value-clarification exercise (see Appendix 1).

Table

A description of the interaction between the two language games (based on PEA and DEQ).	Transcript from the value-clarification exercise on genetic testing (Session III, 3.2).
Anna and Sofia are leading the conversation. Anna begins by presenting the value-clarification statement which her group has formulated, and upon which their peers will deliberate in the value-clarification Hot Chairs exercise. She reformulates the statement as a question.	1. Anna: Do you think it would be ok if employers demand that their employees take a genetic test and then share the results with them? Something which is done in some places in the US. 2. Anna: Move if you don’t think it’s ok.
The students move between the chairs, but in order to make a decision Nino wants more epistemological information about the criteria. Thus, the gap he opens up can be reformulated as an epistemological question. E-DEQ: Does this concern only certain employers, or employers and jobs generally?	3. Nino: So it’s about a certain employer? Not any employer, or? 4. Sofia: Yes. I mean, if those who want to employ you say, like, well… Have a genetic test!
Nino remains seated, thinking that it is alright under certain circumstances. He begins by creating a relation to a disease that could lead to problems in the workplace. E-DEQ: Is there a risk associated with certain diseases?	5. Nino: There are jobs which might need that. I’m primarily thinking about jobs which you… which may require… for example, you don’t know there are certain… like schizophrenia. Well, you may have a seizure any time and perhaps you don’t even know that you have it. 6. Anna: You mean epilepsy, with seizure. [Laughs]
Thus, after first establishing an epistemological relation, he now shifts over to the aesthetic language game. The aesthetic relation he creates concerns the risk to human life. A-DEQ: Should we safeguard people’s lives?	7. Nino: Right, I meant epilepsy… but it may come right out of nowhere without even knowing that you had it. And it’s the kind of disease… And that makes me think that in certain jobs you may risk other people’s lives.
Dan (having also remained seated) relates to the basis of Nino’s argument by forming the condition for an epistemological reasoning about which jobs are in question here. He also creates an aesthetic relation to this. E-DEQ: Could this lead to consequences within the military? A-DEQ: Should we safeguard people’s lives?	8. Dan: I was mostly thinking about, within the military, if you have epilepsy and you don’t know it and you’re out and… I mean, you could risk other people’s lives. So, it depends entirely on which job it is.
Eliza (who also has remained seated) adds further epistemological relations. The aesthetic language game, in which the importance of defending human lives has been established, now leads to a developed epistemological reasoning about which types of work fulfil the criteria for constituting a threat to human life. E-DEQ: Could the consequences be related to certain jobs?	9. Eliza: Yes, and I was also thinking a little on, like, the construction business… Kind of, anyway… You know, thought I’d add that to the thing about the military.
Sofia questions the epistemological basis of whether this specific example of a disease, epilepsy, holds for a more general discussion on genetic testing. E-DEQ: Can epilepsy be determined through genetic testing?	10. Sofia: But maybe epilepsy’s not anything that you can find out about through a genetic test?
Nino turns it into a general discussion about what to think about the phenomenon (genetic testing), which can be turned into an epistemological DEQ. E-DEQ: Is there the probability of unforeseen events?	11. Nino: But if there is any disease which may affect your work. I mean, it could appear with a bang, you know. Suddenly something happens.
The question of what should be included in the assessment of consequences remains. Is it the threat to other people’s lives or the ability to adequately perform one’s work that should be the deciding moral factor?	12. Eliza: By that, do you mean affect others or the work generally?
Nino claims both as points of departure, but then only argues the first, based on epistemological arguments about risk to human life in different occupations. E-DEQ: Is there a risk of blackouts with Alzheimers? A-DEQ: Should we risk or endanger people’s lives?	13. Nino: It may affect both the job and other… For example, in the military, if you’re a senior officer and you don’t know that you have, for instance, Alzheimer’s, then you forget something. You really don’t remember it. Then you may risk other people’s lives, for instance… If you’ve planned something and then you forget something because you’ve got Alzheimer’s.
Torkel (who has switched chairs in the value-clarification exercise) offers a different opinion. He raises an aesthetic issue about everyone’s equal right to employment. A-DEQ: Should all people have equal right to employment?	14. Torkel: I mean, I don’t think it’s ok. Cause let’s say that a genetic test shows that you will have cancer in, like, ten years… and they decide not to hire you because of that. That’s unreasonable! I mean, you shouldn’t have less chance of getting a job, if you… if you have… just because there’s a risk that you have a disease in, say, ten, fifteen years, or perhaps even in five years. I mean, you should be able to work until you go on sick leave, at least!
Anna, who is leading the exercise, reformulates the question arising from Torkel’s aesthetic language game into an issue about equality and everyone’s right to the same conditions of life. A-DEQ: Should everyone have the same right to basic conditions in life?	15. Anna: You think that everyone should have the same basic conditions of life?
Torkel reverts the question to a similar issue of the right to employment. A-DEQ: Should all people have the same opportunities to get a job?	16. Torkel: Well… There are pros and cons with everything, but I still think that you shouldn’t have less opportunity for getting a job because of that.
Anna turns to Saga.	17. Anna: Saga, did you switch chairs?
Saga continues Torkel’s aesthetic language game about justice, while at the same time relating it to an epistemological language game about risk as probability. The epistemological reasoning concerns the probability of having different diseases. The aesthetic reasoning concerns the right to be able to make a living. E-DEQ: Is there a difference in the time it takes for various diseases to manifest? A-DEQ: Should the time it takes for various diseases to manifest matter in this case?	18. Saga: Well, I mean, I’m a bit split, but… I’m on a similar track, that… As you said, there are risks. It’s not like… You will get cancer in ten years, you know. And therefore, I think it’s unfair, that, uhm… I mean, shouldn’t you… I mean, if I’m entirely healthy now, shouldn’t I be able to make a living because I’m going to have a disease in like ten years? I think it’s unfair. 19. Anna: Do you have anything more?
Saga changes tack and demands more information about how genetic information will be shared and with whom. Behind this lies a new aesthetic issue about trust, secrecy, and integrity. Who should have access to information about other people’s bodies, and what degree of confidence is it possible to have in those who require the information? A-DEQ: Should we trust the integrity of insurance companies?	20. Saga: No, but it was this too, that, can you trust the companies? With whom will they share the genetic tests? 21. Anna: Do you think that, like, uhm… (inaudible) … 22. Saga: No, but… Would you have felt safe with giving away your genes to a company? If, for instance, an insurance company gets hold of your genes and you just, like… well, I’m going to have insurance, life insurance and, you know… the company and they say no because there’s a risk that you may have cancer in ten years. That’s, you know… Who should have access to your genes and who shouldn’t?
Linn persists with Saga’s reasoning about secrecy. She feels that the decision on a question about integrity and [mis]use of genetic information should be a personal one. A-DEQ: Should we trust insurance companies to keep our genetic information confidential?	23. Linn: I feel like this—that I don’t want to give my genes to someone you can’t trust. They can do so many things with them. I mean, you can get pretty far with someone’s genes, if you know what I mean. And the same thing, I don’t want people to see any advantage to having my genes. Like this, like, I have her genes and let’s look this up and then we can make sure she doesn’t get insurance and, like that. Ah well, that’s how I feel anyway. I don’t want to give away my genes to someone who’s just using them.
Arvid poses an epistemological question about what this means actually: What is it that the employers get and what does the information consist of? E-DEQ: Is there a difference between having actual genes and having information about genes?	24. Arvid: Do the employers really get the actual genes? Don’t they get only the information, kind of?
This prompts Saga to discuss where to draw the line with personal integrity. What is it that is private – the genes or the information about them? A-DEQ: Should we put any trust in life insurance companies?	25. Saga: Yeah, but they can give the information… And, you know, if you apply for a job… to an insurance company, then they’ve still got your information. And who says they won’t save it? If it’s a large insurance company. There’s a big chance that you… if it’s life insurance that you…
And then, Anna rather abruptly ends the discussion.	26. Anna: Then we’re finished.

Table A1 . Issues at stake and order of language games in the value-clarification exercises dealt with over three sessions.

Session I		Session II		Session III
1.1 The creation of large data registers of people, about genetic relationships, diseases, etc., should be allowed. 1.2 I would agree to handing over my DNA to gene banks in research companies that are developing better ways to control diseases and develop drugs. 1.3 A family member suffers from severe haemophilia and the option of using gene therapy has emerged. There is a risk that the person will die if this is used. Move on if you agree with this. 1.4 Research shows that genes can be genetically modified to make humans stronger. I believe this contributes to human development. 1.5 If it becomes possible to clone and mass-produce organs such as kidneys, and you get a disease that requires the organ it should be possible to buy it. 1.6 If a woman suffers a miscarriage, she should be allowed to take stem cells from the foetus and clone it.	E-E- E-A- E-A- E-E- A-A A-E- A-A- A-A- A. E-E- E-E- E-E- A-A. E-E- E-E- A-A- A-A- E-E- A-A. E-A- A-E- A-E- A-E- E-E- E-E- E. A-E- A-A- E-A- A-A- A-E- E-A- E-A- E-A- E-A- E-E.	2.1 I would likely leave my DNA to a gene bank in the future. 2.2 The creation of large data records of people’s relationships with each other, their medical records and results of DNA analyses for future research should be allowed. 2.3 A family member suffers from haemophilia and the alternative to using gene therapy has emerged. You are the decisive voice; do you say yes or no? 2.4 I think it’s okay to use gene therapy to: improve muscle capacity, become smarter, change my skin colour, or increase the length of my hair. 2.5 If it becomes possible to clone and mass-produce healthy organs, then it should be possible to buy these in order to prevent diseases. 2.6 In the event of a miscarriage it is okay to take stem cells from the foetus to make a clone.	A-A- A-A- A-A- A-A. E-A- E-A- A-A- A-A- A-A- A-A- A-A- A-E- E-A. E-E- E-E- E-E- A-E- E-E- A-E- A-A- E-E- E. E-E- E-E- A-E- A-A- A-A- A-A- E-A- A-E- A-A- A-A- A. E-E- E-E- A-A- A-A- A-E- E-A- A-A- E-E- E-A- E-A- E. E-E- E-A- A-E- A-A- A.	3.1 I would consider taking a genetic test that would reveal the possibility of my developing Alzheimer’s or cancer later in life and mean my having to live with that knowledge. 3.2 I think employers have the right to require that their employees take a genetic test and to share the results with them before employment. 3.3 If I were diagnosed with schizophrenia I would agree to take a tailor-made medication that cured the symptoms even though the psychological side effects were unknown. 3.4 With more research on tailor-made medicines, more developed drugs will be produced, leading to a higher average life expectancy among the population. 3.5 Assuming that there has been a brutal murder late at night in a school and that the killer has left traces that allow the police to take DNA, should the police, who suspect teachers and students, have the right to force hundreds of innocent people to have blood tests and have their DNA analysed?	A-E- E-E- A-A- A-A- A-A- A-A- A-A- A-A- E-A. E-E- A-E- A-E- E- E- E-A- A-A- A-E- A-A- A-E A. A-E- E-E- E-E- E-E- E-A. E-E- A-A- A-A. E-A- A-A- A-E- E-E- E-E- A-A A-A- E-E- E-E- A-E- A-E- A-E- A-E- E-E- A-A.
1.7 It is okay to genetically modify endangered organisms to preserve biodiversity.	A-A- A-A- A-A- A-A- E-E- E-E- E-E- A-A- A-A- A-E- A-E- E-E- E-E- E-E- A-E- E-E- A-E- A-A- A.	2.7.1 It is okay to clone cattle or plants to select for the best offspring. 2.7.2 It is okay to genetically modify an endangered organism if this will enhance biodiversity. 2.7.3 This (above) would be different if it were humans that had caused the extinction rather than extinction through ‘natural’ processes. 2.8 It’s okay to modify plants genetically but not animals.	A-A- E-A- A-A- A-A- E-E- A. A-A- E-A- E-A- A-A- E. A-A- E-E- E-A- E-E- E. A-E- A-A- A-E- E-A- E-A.	3.6 Many people think it is okay to use DNA analysis in forensic technology but there are also companies (such as Apple and so on) that register our fingerprints. I think it’s okay if more companies started collecting and publishing DNA and fingerprints.	E-E- E-E- A-E- E-A- E-E- E-E- A-A- A-A- E-A- E-A A-A- E-A