Article type
Year
Abstract
Introduction/Objective: To gather rigorous, empirical evidence on the current extent of genetic discrimination; to predict, from evidence assembled in the simpler case of monogenic conditions, how society is likely to handle the genetic information expected in future from tests for polygenic, multi-factorial conditions; and to assemble a solid base of empirical evidence which will inform current debate over the impact of widespread genetic testing on society. Hitherto discussions of how insurers and other institutions in society may use genetic information have been largely abstract or theoretical in character and have been driven principally by US concerns over private, insurance-backed access to healthcare.
Methods: A self-completion questionnaire was distributed to 7,066 people in Britain on the membership lists of eight support groups for families with genetic disorders. This survey population included those actually suffering from genetic disorders, those at risk of late onset conditions, healthy "carriers" whose future children might be at risk, and non-carriers who represent no risk whatsoever. The questionnaire was non-directive and asked for positive experiences as well as negative. Apart from one small group, the questionnaire went to a systematic random sample of 1,000 members of each group with no prior selection as to those most likely to have suffered discrimination. A comparator study was conducted of the experiences of a representative sample of 1033 members of the population, involving questions administered by researchers at households across the UK.
Results: A response rate of more than 53 per cent was obtained, allowing numerical comparisons with the experiences of the population at large and cross comparisons of sub-groups of the surveyed population. Clear evidence was found of unjustified discrimination by insurers and others - where individuals were not treated in accordance with the actuarial risks they presented. Unfair discrimination was also found - where individuals who presented similar actuarial risks were treated dissimilarly.
Discussion: Insurers appear not to be operating a consistent policy for assessing genetic information, nor are insurers acting in accord with the actuarial risks brought to them The inconsistency suggests error on the part of sales agents or underwriters rather than corporate policy and, to secure public confidence, the industry may need to institute an independent external appeals mechanism to deal with error. Other institutions of society (employers, the medical profession and social services) are also handling simple genetic information poorly, suggesting that as and when probabilistic genetic information becomes available from tests for multi-factorial diseases (cance, heart disease, Alzheimer's, etc.) systems will have to be established for handling such information in a manner that is publicly seen to be equitable.
Methods: A self-completion questionnaire was distributed to 7,066 people in Britain on the membership lists of eight support groups for families with genetic disorders. This survey population included those actually suffering from genetic disorders, those at risk of late onset conditions, healthy "carriers" whose future children might be at risk, and non-carriers who represent no risk whatsoever. The questionnaire was non-directive and asked for positive experiences as well as negative. Apart from one small group, the questionnaire went to a systematic random sample of 1,000 members of each group with no prior selection as to those most likely to have suffered discrimination. A comparator study was conducted of the experiences of a representative sample of 1033 members of the population, involving questions administered by researchers at households across the UK.
Results: A response rate of more than 53 per cent was obtained, allowing numerical comparisons with the experiences of the population at large and cross comparisons of sub-groups of the surveyed population. Clear evidence was found of unjustified discrimination by insurers and others - where individuals were not treated in accordance with the actuarial risks they presented. Unfair discrimination was also found - where individuals who presented similar actuarial risks were treated dissimilarly.
Discussion: Insurers appear not to be operating a consistent policy for assessing genetic information, nor are insurers acting in accord with the actuarial risks brought to them The inconsistency suggests error on the part of sales agents or underwriters rather than corporate policy and, to secure public confidence, the industry may need to institute an independent external appeals mechanism to deal with error. Other institutions of society (employers, the medical profession and social services) are also handling simple genetic information poorly, suggesting that as and when probabilistic genetic information becomes available from tests for multi-factorial diseases (cance, heart disease, Alzheimer's, etc.) systems will have to be established for handling such information in a manner that is publicly seen to be equitable.