title: Pharmacogenetics: a new challenge for health law.
abstract: Developments in pharmacogenetics make it possible to determine the genetic factors that influence variations in response to medicine. Differences in response to medication may be related to the genetic characteristics of the individual, to the genetic make-up of the diseased tissue or to both. Advantages include optimal therapeutic effect, safe medication, minimised side-effects, and development of medication for small groups of patients. Strict adherence to patients' rights and to the medical professional standard must prevent negative effects of pharmacogenetics on individual rights, notably the right (not) to know, to privacy and informed consent. Use of pharmacogenetics by third parties for non-health related purposes may bring about a disproportionate intrusion of the privacy of an individual; it may result in barriers for accessing primary social goods, and it may be a disincentive for the individual to have a pharmacogenetic analysis performed for individual health care purposes or to participate in a drug trial. Medical examinations before employment must be justified by the health requirements unavoidably inherent to the job (their objective being the protection of health and not the financial interests of the employer). In a system that relies on private insurance for having access to primary social goods (health, disability--and life insurance), the use and the outcome of a pharmacogenetic analysis for the purpose of differentiation between insurance candidates on the basis of their "risk-profile" must be restricted; where appropriate measures should take into account justified interests of the insurance company to prevent adverse selection. Current measures in several European countries are not effective enough to meet the concerns specifically inherent to pahrmacogenetics. Human rights principles must be at the basis of national and European policies for providing adequate protection against disproportionate intrusion into private life, for guaranteeing equity in access to health care and accessibility of other primary social goods.
authors.forename: Henriette D C
authors.initials: HD
authors.lastname: Roscam Abbing
mesh_terms: D035843:Biomedical Research / Q000941:ethics / Q000331:legislation & jurisprudence; D005060:Europe; D030661:Genetic Privacy / Q000941:ethics / Q000331:legislation & jurisprudence; D006801:Humans; D010597:Pharmacogenetics / Q000941:ethics / Q000331:legislation & jurisprudence*; D012945:Social Values