TRUST today (Friday, November 1, 2002) welcomed the decision of St. James Hospital to abandon a Needs Assessment Research Project following a complaint aired on the Joe Duffy Radio Show.
TRUST also called on the Minister for Health to get all groups involved in such survey research in Ireland to agree on a new Protocol to make data collection and needs-assessment as well as social research projects conform to the same standards applied in pure and clinical research.
Alice Leahy Director and Co-Founder of TRUST said:
“While constructive research is necessary to plan services, there is an onus on researchers when dealing with vulnerable people, including those requested to collect personal data in voluntary and statutory services, to respect their rights, especially in relation to choice and informed consent. They must be aware at all times that dependent people in need may not feel able to say no and to proceed, as in this case, has serious consequences.
“The Hospital’s decision to abandon the research project and to offer support to those who were upset by it is to be welcomed. We will be contacting the Minister for Health to urge him to get relevant interest groups in the research and social field together, to draw up a new Protocol and to ensure that Needs Assessments Surveys always conform to the much more exacting standards applied in clinical or pure research work in the social field.
“We first highlighted our concerns in 1976 and were successful in opposing the use of people who are homeless in drug testing. We have continued to campaign against the exploitation of vulnerable people in research projects of all kinds. Needs Assessments Surveys can have serious psychological repercussions on people who already may have many serious problems. This type of research should only be carried out under the strictest supervision and under the auspices of the Ethics Committee in each hospital, which did not happen in this case (as was admitted in the statement issued by St James.) The proposed Protocol should also cover all such projects taking place increasingly in the wider community.”