Genetic screening for iron overload: No evidence of discrimination at 1 year.
OBJECTIVE
This study measured the extent of insurance and employment problems associated with population screening for hereditary hemochromatosis and iron overload.


METHODS
101,168 primary care patients from the US and Canada were screened for iron phenotypes and HFE genotypes associated with hemochromatosis. Those identified to be at risk (2253) were offered a clinical examination, which 1677 (74%) accepted, and the 1154 of these who responded to an initial questionnaire about psychosocial issues were surveyed 1 year later about whether they had experienced problems with insurance or employment that they attributed to hereditary hemochromatosis and iron overload.


RESULTS
832 (72.1%) of the 1154 participants surveyed after 1 year responded to the second survey. Three (0.4%) had verified problems with insurance or employment that they believed were related to hereditary hemochromatosis and iron overload. Two had problems with life insurance, and one with long-term care insurance. All 3 had elevated iron levels but not a relevant HFE genotype. One of the life insurance problems was resolved; the second one was not serious. The participant who was denied long-term care insurance had other health conditions unrelated to hereditary hemochromatosis and iron overload that could have contributed to the denial. No problems were verified for health insurance or employment, or from any of the comparison group participants (controls and those with inconclusive screening results).


CONCLUSIONS
The risk of insurance or employment problems 1 year after phenotype and genotype screening for hereditary hemochromatosis and iron overload is very low.
Hall
Mark A
MA
Wake Forest University Medical School, Department of Public Health Sciences, 2000 West 1st Street, Winston-Salem, NC 27157-1063, USA. mhall@wfubmc.edu
Barton
James C
JC
Adams
Paul C
PC
McLaren
Christine E
CE
Reiss
Jacob A
JA
Castro
Oswaldo
O
Ruggiero
Andrea
A
Acton
Ronald T
RT
Power
Tara E
TE
Bent
Thomas C
TC
D000328:Adult; D002170:Canada; D004651:Employment; D005260:Female; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000191:economics; D006432:Hemochromatosis / Q000191:economics / Q000235:genetics*; D006801:Humans; D015273:Insurance Selection Bias; D008297:Male; D008875:Middle Aged; D011287:Prejudice; D011320:Primary Health Care / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D014481:United States