• SETOYAMA Koich
  Professor, Graduate School of Medical Science, Kyoto Prefectural University of Medicine

The Genome Medicine Promotion Act (Act on the Comprehensive and Planned Promotion of Measures to Enable the Public to Receive High-Quality and Appropriate Genomic Medicine with Peace of Mind), enacted in June 2023, requires the national government to take measures against “unjust discrimination” based on genomic information. In response, the Ministry of Health, Labour and Welfare established a Working Group (WG) to develop a basic plan, holding approximately a dozen meetings over a period of more than one and a half years. However, the WG has yet to establish clear criteria defining which specific uses of genomic information constitute “unjust discrimination.” The very term “unjust discrimination” may appear conceptually contradictory, as it implicitly presupposes the existence of “discrimination that is not unjust.”

One possible approach to identifying unjust discrimination seems to be found in firstly defining what constitutes “discrimination that is not unjust.” Then, what does “discrimination that is not unjust” refer to?

When individuals with favorable genetic attributes achieve high scores on university entrance examinations and gain admission, often with additional advantages provided by a privileged environment, such as parental financial resources or educational investments, we usually do not characterize the outcome as discrimination. Likewise, when individuals who have already developed serious illnesses, such as cancer, are unable to obtain life insurance, this is generally not condemned as discriminatory treatment. Life insurance premiums are typically set lower for those who enroll at a younger age. Denying enrollment to older individuals or charging them higher premiums, even if they are allowed to be enrolled, is not considered age discrimination. Similarly, when genetically advantageous physical appearance is taken into account in the hiring process of actors or television announcers, such selecting practices are rarely denounced as discriminatory.

Insurance systems operate under the principle of actuarial fairness, which means that premiums are determined based on assessed risk. For example, automobile insurance premiums are usually set higher for younger drivers and for sports cars because they are statistically more likely to be resulted in accidents. Similarly, when making employment decisions, organizations seek to recruit individuals who are expected to substantially contribute to the organization in terms of viewership, sales, and other criteria. In this context, employers and insurers may have good reasons for treating people differently based on attributes like age or appearance. From the perspective of employers and insurance companies, they are simply making "rational distinctions." Next, we have to consider a crucial question: if the exclusion of certain individuals through discriminatory practices is supported by reasonable and rational reasons, does that justify the discrimination and remove it from the category of "unjust discrimination"?

When hiring individuals with the intention of nurturing their potential, companies invest substantial resources in training and development. Therefore, it has been pointed out that when differences in ability are minimal, there is a tendency to favor men, who are often expected to remain in the workforce longer, over women, who have historically exhibited higher rates of early retirement due to marriage and childbirth - particularly for career-track positions. Similarly, it is often observed that female doctors tend to gravitate toward clinical specialties such as ophthalmology and dermatology, partly because these fields offer a more manageable work–life balance in relation to childcare and other family responsibilities. If medical schools were to give male applicants preferential treatment in entrance examinations on the grounds of addressing issues such as shortages in surgical specialists or an uneven distribution of physicians, they would likely face strong public condemnation for discriminating against women. By contrast, job postings for university faculty positions that are only open to female applicants, which have become more common in recent years, are generally not considered discriminatory against men. However, if equivalent positions were advertised exclusively for men, excluding women, such practices would almost certainly provoke a public outcry. These reactions suggest that the criteria for determining whether discrimination is "unjust" are not solely dependent on whether the selecting institution has reasonable justification. Rather, such judgments appear to be heavily influenced by the dominant social norms of a given era. Discrimination based on attributes such as gender or race has been historically pervasive and is widely recognized as a category that should be prohibited. Contemporary society is now being called upon to consider whether to add discrimination based on genomic information to this category.

There is nothing out of ordinary about using genomic information as a predictive value (indicator) of an individual’s future health status or labor productivity. Of course, genomic information is not the sole determinant, as individuals are also influenced to a certain degree by environmental factors such as lifestyle habits. Nevertheless, using genomic information shares a structural similarity with practices such as setting different insurance premiums based on statistical indicators of certain risks, such as age or accident rates, which disregard individual differences. Consider an individual with a high probability of developing a serious, highly hereditary disease, such as certain forms of cancer, for which environmental influences are limited. Should preventing this person from entering certain occupations - even if they have not developed the disease - be considered "unjust discrimination"? Alternatively, consider occupations in which the sudden onset of illness could endanger lives. Examples include workers performing tasks at high elevations on skyscrapers or long-distance highway bus drivers who might lose consciousness due to a seizure. In such occupations, would taking into account the presence of genetic mutations that could lead to loss of consciousness constitute unjust discrimination?

Using hereditary information to protect one's own life or safety differs fundamentally from using it to protect the life or safety of others. The former concerns issues related to paternalism (principle of the preventing self-harm) aimed at protecting the individual, whereas the latter involves the application of the “principle of preventing harm to others.” In the future, genomic information will likely be used more frequently for purposes such as worker health management and health guidance. Furthermore, certain genomic information might be used in the context of safety obligations to customers and other parties.

What are the criteria for rejecting the use of genomic information, even when those who seek to use it can provide rational justification? The standards for drawing this line are likely to vary among companies, workers, patient groups affected by hereditary diseases, and other relevant stakeholders. Therefore, establishing consensus-based criteria through dialogue is a fundamental and urgent issue in the field of genomic ELSI.

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