base of nonidentifiable health information. The licensee is authorized to convert information in the Health Sector Database with a genetic database with the approval of the Data Protection Commission.
No genetic information or samples can be obtained for research purposes without specific patient consent. It goes without saying, however, that any such information found in the medical record would automatically be in the Health Sector Database unless the patient has exercised the opting-out provision.
Given the often eclectic if not confusing state of the law due to the combined effect of privacy, medical confidentiality, and personal data protection, it is difficult to draw any conclusions except perhaps to argue for the consolidation and harmonization of health data protection. This situation occurs because although the trends in all three sectors are welcome, their combined effect creates uncertainty since it is not always clear which rules apply. Moreover, most countries also provide for recourse to overarching constitutional protection, or in the absence of such, to human rights legislation be it national or regional as in Europe. Such consolidation and clarification including the ambit of legitimate exceptions would not only be welcome but perhaps serve as a first step towards an international “charter” on health information.
Furthermore, we are now witnessing a further expansion of health information protection and promotion in the emergence of the right not to know and in the area of research in the move from coding or encryption to anonymization. Both of these recent developments are not without implications, the individual having been effectively removed from ongoing communication of health information. Four questions remain: (1) What degree of informed consent is required for the valid exercise of the “right not to know.” (2) Will anonymization although legally and ethically expedient, ultimately harm good science? (3) In the long run, will both impede identification for follow-up for proper medical treatment? (4) If so, have we unwittingly created a system of overprotection of the individual to the detriment of population health through prevention?
Moreover, in this search for guidance and clarity, health information should be distinguished from the sometimes-draconian overreach of personal data protection often aimed at thwarting access by commercial bodies. The indiscriminate application of this legislation when combined with the moral or legal force of medical codes of ethics can indirectly harm individual health to say nothing of blocking the state's legitimate role in health systems planning. The majority of countries studied here cannot properly fulfill this latter obligation. In the rush to promote individual privacy and autonomy with regard to health information, we may have lost sight of the larger picture of the health of society and that of future generations.