Abstract
I explore the role that values and interests, especially ideological interests, play in managing and balancing epistemic risks in medicine. I will focus in particular on how diseases are identified and operationalized. Before we can do biomedical research on a condition, it needs to be identified as a medical condition, and it needs to be operationalized in a way that lets us identify sufferers, measure progress, and so forth. I will argue that each time we do this, we engage in epistemic risk balancing that inevitably draws upon values and interests, often including social and ideological values. My main interest here is in the conceptualization of infertility as a disease. Infertility is a rich test case for exploring the interplay between interests and epistemic risk management. There is no uncontested or standardized definition of infertility. The various definitions of it are internally ambiguous and tension-ridden, and in spectacular contradiction with one another. Many interest groups who are invested in framing infertility as a pressing problem deserving of social and medical redress are quick to insist that it is a legitimate ‘disease,’ but they cannot agree on which disease it is, what its symptoms or diagnostic markers are, or even what its basic ontology is. I suggest that there are political explanations for this epistemic mess. Indeed, I contend that there are good scientific and ethical reasons to reduce away the category of ‘infertility,’ especially understood as a scientific or medical category; I argue that we should excise the concept from our research and clinical practices.
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Notes
For this part of the paper, I will draw heavily from and build upon Biddle (2016).
The previous two paragraphs draw heavily on Biddle and Kukla (2017).
For more on the nature of disease and how something becomes one, see Kukla (2015).
Of course, there are diseases that are not continuous in this way, but all or nothing. You either do or don’t have Down syndrome, or pancreatic cancer. I think there are interesting epistemic risk issues surrounding such cases too but they are not my interest at the moment.
http://www.who.int/reproductivehealth/topics/infertility/definitions/en/, accessed 7/18/2016.
Brown et al. (2016) make this point as well.
This desire condition shows up elsewhere in the scientific literature as well; for instance, Gnoth et al. (2005) write, “Subfertility generally describes any form of reduced fertility with prolonged time of unwanted non-conception.” Notably, Gnoth et al.’s definition is also entirely ambiguous between an individual and a couple being the unit that suffers from subfertility.
This is not to deny that socially managed epistemic risks penetrate here as well. How bad it is to lose a breast for different individuals, whose breasts society cares about most, how different individuals receive support to cope with pain or pay for treatment, who has a good prognosis, whether a patient should receive a follow-up screening, a lumpectomy, or a mastectomy—all these factors and decisions and more are marked by interests and values that shape our epistemic risk management. The policies and practices concerning mammography alone could yield a full-length complex analysis of epistemic risk management in light of values. My point at the moment is just that there is an identifiable disease with identifiable effects that can be described independent of these value-laden social factors.
Note that even calling these technologies ‘fertility preservation’ technologies plays on ambiguities in the definition of infertility that we saw earlier, since it is unclear whether someone who uses frozen reproductive tissue and IVF to become pregnant counts as having avoided infertility or as having become pregnant despite infertility—an ambiguity that should not exist if infertility were a normal, well-defined disease.
We saw this briefly above in the context of risk of iatrogenic future infertility in cancer patients.
And continue to do so, as the recent proposed WHO changes make clear!
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Kukla, R. Infertility, epistemic risk, and disease definitions. Synthese 196, 4409–4428 (2019). https://doi.org/10.1007/s11229-017-1405-0
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DOI: https://doi.org/10.1007/s11229-017-1405-0