Team:SDU-Denmark/Ethics
Ethical Problem
Consequential Problem
Is it always best to know? Certainly, if it’s good news. But what about bad news? Your genetic dispositions? The certainty of a fatal disease? The uncertainty of an only potentially fatal one? With the rise of genetical engineering, these are certain questions that we should ask ourselves. In human practise we ask why we should use it – and if it’s for the best.
Considering the relatively old age of diagnosis, it is worth considering whether some men would be better off not knowing. Diagnosis may result in unnecessary worry and other unwanted consequences. In short, the good intention of developing an easily accessible test may result in a not-so-good consequence. The problem can be illustrated like this:
- Good intention of making an easily accessible test
- More elderly men getting diagnosed with PC
- More unnecessary worry for the men
- Ergo: Good intention = bad consequence
This is an argument made on consequentialist terms. Consequentialism is the ethical position that promotes maximization of “feeling good” in the overall lifespan of human lives.
The consequentialist may argue against the ethical defensibility of developing such a test for prostate cancer. How do we counteract such an argument?
Consider premise 3. This states that the worry, in order to have an overall negative effect of the lifespan, must be unnecessary. But if we manage to develop a test that can distinguish between malignant and non-malignant cancer, the premise falls short of proving this as a negative consequence. Only the types of cancer that need treatment could be diagnosed. In short, the argument does not take account for the aspect of differentiation in prostate cancer types. Our good intention does therefore not, necessarily, lead to an overall decrease in life quality for elderly men. This is, therefore, a consequentialist defence of our PMT-system on the consequentialist’s own terms.
Relational Problems
The principle of autonomy can be said to be more relational in character. Being a disease-specific to gender, prostate cancer is often associated with taboos and shame. The cultural and gender-related topics are mostly covered in the Summary of Interviews but are important to consider the potential consequences of an easily accessible and precise test. Intuitively, knowing that you have a disease is better than not knowing. But what about the knowledge of a disposition? By knowing that you might be disposed to develop the disease, you may be taking the bad stuff “in advance”, worrying about a disease you have not even developed yet.
Here we enter the field of predictive medicine, a sub-field of personalized medicine: the prevention, prediction, and treatment of diseases on grounds of the patient’s genetic information. In the CRAT-system, the person’s genetic information is effectively used for exactly the prediction of developing prostate cancer. While the technology is new and interesting, the problems of being “destined” to a random and cruel fate go back to the ancient Greeks. While it seems unfair that some by default have a high disposition to develop a fatal disease – say, malignant prostate cancer at an early age – at least we now have the possibility to tell the subject. But should your genetical information be accessible to researchers and the like? One prominent argument shows the grey zone between relations and epistemology and goes like this:
“To donate one’s data to specific types of research within personalized medicine is, to a wide extend, about seeing oneself as part of a biological community, where the hope for change transcends caring for yourself and the ones you know here and now, but where the goal obviously is a bigger degree of individualized and personalized medicine in the long run”[1]
Epistemological Problems
The epistemological problems of the PMT-system are covered in the article Reflective Equilibrium & Prostate Cancer . The conclusion is that the empirical findings of the indications from the different biomarkers are to be countered with moral intuitions, in order to find out the action-guiding instructions from the test results. This is the abstract: This article considers the epistemological and ethical problems of the established PSA-Test for prostate cancer. This is because PROSTATUS, the iGEM SDU 2020-Team is trying to develop a urine test for prostate cancer. The logical and relational problems of an alternative are considered, and these are set in relation to the discussion of the value-free ideal. The rest of this section will mainly deal with the CRAT-system.
The possibility of mapping the entire genome of a person is, without doubt, one of the biggest scientific achievements of the 21st century. There are (probably mostly) good reasons to be optimistic about this. But how does a person handle this data? Is it private, should other people have access to it? Should the information be integrated into the patients’ medical files? Why/why not?
There are four key aspects to keep in mind when handling genetic information about individuals [2]. Here, we can put our CRAT-system into perspective by highlighting the main problems that could occur when handling the information delivered by the test.
- Protection against harmful activity: This aspect mostly covers anonymity and the like when interacting with digital platforms. Although this subject is beyond our expertise, it would be essential to the consumers that their data is handled with the care and security needed.
- Economic fairness: When ordering a genome test, consumers mostly comply with their information getting stored, and potentially used, by the company that they are buying the test from. Their information could be used to do research that, in the end, could become an economical burden for themselves. The companies might capitalize disproportionally from the information given by the consumers. This is, of course, a totally political question, with no right or wrong answers, but it is key that the consumer is made aware of this.
- Information-based discrimination If you were to hire one person, choosing between a man with a predisposition to developing prostate cancer and a man without a predisposition to developing prostate cancer, who would you hire? This proves that we need clear and systematized protocols for handling the information.
- Interference of autonomy Knowledge is power. Knowing a person’s predisposition might be a direct tool for manipulation. The test subject might therefore be negatively affected by a test that the subject initially thought would be beneficial.
All these factors should be accommodated if this test is to be implemented by the governmental initiative.
References
[2] Van den Hoven in Petersen. 2020, p. 140 ‘Privathed’, in Personlig Medicin: Klausen, Søren Harnow; Christiansen, Karin. 1st ed. København: Munksgaard; 2020. Own translation.
