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UPA Perpustakaan Universitas Jember

Autonomy, Well-Being, and the Value of Genetic Testing for Adopted Persons

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This paper argues that the value of genetic-relative family health history
(GRFHx) information and the notion that lack of this information is a disadvantage
can be established through its role as a nested goal in comprehensive life projects
independent of documentation of particular health outcomes. Health information
often plays a significant role in a person’s formulation of life goals and projects, as
well as in identification of plausible effective means to realize these goals. If health
outcomes are valuable in part because of the nested role these play in the successful
realization of a person’s life projects and goals, then other, similarly nested con-
tributors to such success must also be valued on a similar scale. Some of these other
contributors to a successful life may themselves be nested with health considera-
tions, as illustrated in the relationship that will be the focus of this paper. Health
information –independent of outcomes per se – influences relationships, reproduc-
tion, and the formulation of plausible comprehensive life goals in intricate and very
influential ways. Although such information may be valued in part because it is
predictive of health outcomes, this relationship does not reduce such information,
nor the comprehensive life goals and projects such information promotes, to health
outcomes. That is, while health status can both enhance and detract from the
autonomous (successful) pursuit of life projects formulated in the context of health
information, the value and weight of these projects is independent of particular
health status or outcomes, even while in part shaped by them.

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