oa Privacy and Ethics in Human Biomarker Studies

Human biomarker studies support the understanding and prevention of environmentally induced adverse health effects. However, using human samples and data related to human health raises sensitive issues related to ethics and privacy and is subject to various regulations/rules. Overall emphasis is primarily on decisional autonomy and protection of individual rights. The collective need to protect health as a public asset is less valued. The question is whether study subjects are adequately and equally protected in current practices and whether progress in environmental health research is still safeguarded. Scientific needs have to be balanced with rights of study subjects. At the same time samples and data should be used at maximum to the benefit of all, which might include secondary uses of samples/data. Decision making processes should take into account respect for human dignity and equality of moral status of all individuals, social justice, solidarity and democratic participation as appealing values and useful complements to the four conventional bioethical principles. Trust and confidence are needed to promote voluntary participation in studies. An adequate communication at all stages of the study is of key importance.