Thomas Schramme

“Genetic information” may refer to information about a person’s family history, raw DNA sequence data, or an interpretation derived from the raw data. This chapter addresses what counts as genetic information, especially about humans, and the limitations on what can be known.Family history provides information relating to risk of disease without genetic testing. Genetic linkage studies provide information about the co-localization of a disease-related gene and a nearby marker on a chromosome. Tracking the marker can indicate whether someone has inherited the corresponding disorder. In contrast, association studies are performed on large populations and identify many dispersed genetic factors that influence the chance of developing complex diseases. Confidence in the accuracy of individual predictions based on linkage studies is often very high, while genetic association studies provide information that applies robustly to a population but not so readily to individuals. Further, predictions based on linkage analyses are open to improvement through the identification of errors, while such feedback is not feasible with polygenic scores applied to individuals from association studies.The distinction between “raw data” and “information” is fuzzy: when does data become information? The high-throughput methods now in use require an interpretive step based upon sequence information and an accumulated body of knowledge from other individuals of known phenotype in order to draw any useful conclusions from a person’s genetic constitution. Some variants will be assessed as of Uncertain Significance (VUSs). This raises the question of future reanalyses and reinterpretations of such VUSs or genome sequence data in general. In addition, unsought information may be found concerning risks of other diseases or of misattributed relationships within a family.Developments in DNA sequencing have led to an explosion in genome sequence data. Ownership of individuals’ DNA sequence is probably an unhelpful concept, but access to such information and control of how it is applied is important and may be subject to legislation.

Conceptions of childhood have undergone continuous and historical evolution; children can no longer be regarded as small adults. Most contemporary views on the nature of childhood are derived from Aristotelian concepts; they stress its developmental nature and the role of adults in guiding and facilitating children’s development. Transformation to adulthood occurs by a process of biological, cognitive, and moral development in which distinct stages can be identified. Children’s portrayal in art, literature, and the media has largely mirrored evolving concepts of childhood and increasingly takes account of children’s voices.Biologically, children’s anatomy, physiology, and pathology go through significant changes. Infants and very young children show an increased vulnerability to environmental and other harms, because of their size, immature anatomy and physiology, and differing pharmacodynamics. Organ development determines the patterns of disease that occur in childhood and affects drug treatments and responses to them.Cognitive development (the child’s evolving ability to think and understand) is classically understood as following a series of stages in which genetically determined characteristics interact with events and experiences to influence patterns of cognition. A similar staged pattern is seen in moral development in which the child’s capacity to make decisions about what is right or wrong gradually evolves. Contemporary neuroimaging techniques have provided structural and functional evidence to underpin this process. A child’s stage of cognitive and moral development is used to determine what legal status they may have and what weight should be placed on their desire to determine their own best interests.Concepts of children as rights holders allow them to have moral agency, irrespective of their cognitive ability or capacity to exercise choices. A staged acquisition of liberty rights (i.e., right to self-determination) seems plausible, as does the universal possession of welfare and protection rights.The interests of children who lack the capacity to exercise liberty rights can be protected by the application of the best interests or welfare principle. Determination of best interests includes consideration of the harms and benefits involved; the likely outcome of various options; the wishes, preferences, beliefs, and values of the child insofar as she/he is able to express them; the wishes, beliefs, and values of the family and other relevant individuals; and which option is least restrictive of future choices for the child.Children are not small adults who can be treated as though they were, and neither are they uniformly vulnerable beings who need protection; rather they are individuals in transition whose growth into adulthood should be supported, encouraged, and facilitated.

Often, in our popular discourse around science skepticism, we are quick to dismiss those who are suspicious of science or science-based policies as being obviously irrational, confused, or dangerous. This ignores the wide variety of ways that one might be worried about science and its associated incursions into our lives.This chapter aims to give the reader a sense of the diverse ways that one might be suspicious of science. It tracks some of the trouble we have describing members of skeptical groups, particularly in the cases of those who are skeptical about the causal connection between HIV and AIDS, and those who are worried about vaccine safety. It then looks at groups whose skepticism takes the form of wanting more science to be done, rather than skepticism about science as a good route to knowledge about health and disease. This can take the form of either calling for more research to be done on specific diseases or on particular types of bodies. Finally, the chapter looks at skepticism that has nothing to do with the science itself, but is rather directed at science-based policy or clinic-level implementation of policy.

Health promotion is the “science and art of preventing disease, prolonging life and promoting health through the organised efforts of society.” The philosophical questions concerning Health Promotion fall into three categories.A) Philosophy of ScienceIdentifying causation in public health is difficult. Standard empiricist approaches prioritizing prioritize randomized trials may not work. Scientific inquiry using a realist approach and modeling may be better.B) EthicsHidden harms: There are concerns about the quality of evidence behind Health Promotion and that potential harmful effects are ignored in its evaluation.Treating populations: Ethical concerns arise when treatment is based more on the health of the population than of an individual person, such as in vaccination and mass medication.C) Political PhilosophyPersonal autonomy. Libertarians object to State attempts to alter the behavior of the population; they often invoke Mill’s liberty principle, that the State should only protect individuals from harming others, not themselves. By contrast, communitarians believe community efforts that limit autonomy to improve community health can be justified.Inequality. Health promotion can be at odds with another political goal, health equality; measures that improve average population health might also and unacceptably increase health inequality.Precautionary principle. This states roughly that the possibility of severe public health harm permits major State intervention. It was used to justify highly restrictive measures during the Covid pandemic. Its formulation and scope are controversial, however.