Individuation, personalization and civil status. Ethical promises and risks of Personalized Medicine
Professor Y.M. Barilan
In human societies, people are distinct from each other by three key systems. We have systems of individuation, such as I.D. numbers and biological profiling. We have systems of personalization, which identify people by social class, religious affiliation and similar cultural tags. There are systems of civil status. For example, my right to employment and my health insurance are derived from my nationality’s citizenship.
In the framework of human rights, every human has a right to individual identity and status, which is equal to all other human beings. Every human being has a name of his or her own. Naming is both a modality of individuation, but also of personalization. In some societies, names correspond to civil status as well. Names might indicate connections among people (e.g. family names). Genetic data and civil registries allow us to locate human individuals in webs of relationships. Some are biological (e.g. paternity); some are chosen (e.g. marriage, adoption).
Since the time of Plato to the recent paradigm of “bio-psycho-social” model in Western medicine, people have yearned for “personalized” medicine, meaning the adaptation of diagnosis, prognosis and care to their personalities, personal lives and the values they adhere to. Especially in Western culture, the “personal” is what people take as their personal identity and private life. My beliefs, my friends, my values, my creations are all manifestations of my personality, rather than my identity or civil status.
Within this conceptual framework we understand why the expression “personalized medicine” may carry a strong allure. However, we also understand that “personalized medicine” is actually a new system of individuation. It may not pin down every patient, but it clearly aims at using biological markers in order to tell a few persons from others. In a more ambitious sense, personalized medicine is about algorithmic individuation within abstracted webs of big data. We can imagine a “black box” with a rich input that ranges from genetic markers to gut flora and dietary habits, and whose output is a set of probabilities in relation to future health and the likelihood of response to different preventive and therapeutic measures.
The goal of my contribution is to examine four interacting ethical challenges of personal medicine – PM. The first is the disruption of received categories of individuation. The second is the dominance of genetic and similarly “fixed” biological markers relative to “open ended” factors influencing health. The third is the potential impact of this dominance on people’s behavior and self-esteem. The last is the shadow cast by the market economy over the first three issues.
Society has never wanted medicine to be all-inclusive. Rather, while certain pieces of information are considered relevant (e.g. ethnic background in relation to genetic diseases); other must be ignored (e.g. religious affiliation). The unpredictability of PM’s all-inclusive algorithms might shatter these cultural boundaries. This might harbinger new moral promises, such as a sense of solidarity that might arise between very different people who only share a genetic trait in relation to a disease. The intricate webs of associations and connections might strengthen a sense of “human family”. Yet, some risks rear their heads as well.
PM’s evident reliance on genetic markers might marginalize factors that are less readily quantifiable, tend to fluctuate, and appear later in life. Among such factors whose impact on health is well established are stressful life-events, poverty, substance abuse, obesity, physical activity, occupational exposure and loneliness. If PM takes into account accessible parameters, ignoring others, by its own scientific standards, it will become “partially personalized”. Moreover, genomics has become so cheap and sophisticated it might produce rich and long-range information about patients even before they are born, before acquiring civil status and full individuation. People will have personalized medical advice before they become persons. Such information might loom large on the ways parents, society and the person develop his or her personal identity. While many health-related factors are “open-ended” (=the ultimate health outcome depends on human choice), PM data might become self-fulfilling bits of information that influence choice. Factors like substance abuse and employment may reflect perceptions originating in PM data.
The “personalization of medicine” has developed in parallel with the “personalization” of marketing by similar means – the application of sophisticated algorithms on huge databases accumulated from people about people. Google, Facebook and other internet giants do so to maximize profit for their shareholders by means of optimizing the satisfaction of paying users. However, medicine and the human body belong to a different set of values – the altruistic care for vulnerable people is prime among them. We must make sure that the ethos and values of the hybridization of IT and so-called “free market” corporate culture do not dominate “personalized medicine”. The emergent nature of PM doubles the risk. PM might inflate its potentials to recruit investors, and it may project alluring images before desperate patients. The discourse on the regulation of PM and the ethics involved is simmering before PM comes close to a stage of maturity. With skimpy facts, we deliberate from hope, amazement and fear. There have always been tensions between the flamboyant and alluring style of marketing and the responsible, nuanced, and personalized manner of clinical counseling. Yet, the marketing (both to investors and to consumers) of personalized medicine enhances the tension by direct reference to the notions of “persons”, and “personal”.
Drawing on the formative biblical story of the “Good Samaritan”, the paper will show how culture and human choice recognize and create ethical “distances” among people; how PM may contribute to the way we construe identity and obligation. PM’s dependence on matrixes of “big data” are also new prisms through which we individuate each other as medical patients and as persons.