Chunk #39 — PART II. CORE QUESTIONS — D. If Data and Samples Can Be Re-identified, Are There Any Biobank Research System Responsibilities to Offer Return of IFs and IRRs? — The ethics of return in individual studies
In some respects, the international community has gone further than the United States in recognizing a duty to return IFs and IRRs in individual studies. Indeed, the incidental findings issue was acknowledged by the international community in the mid-1990s in a statement by the international Human Genome Organization (HUGO), which declared that “[c]hoices to be informed or not with regard to results or incidental findings should…be respected.”48–50(p4) In its “International Ethical Guidelines for Biomedical Research Involving Human Subjects,” the Council for International Organizations of Medical Sciences51(p38) has provided that “individual subjects will be informed of any finding that relates to their particular health status.” CIOMS also states that “subjects have the right of access to their data on demand, even if these data lack immediate clinical utility.”51(p38)
