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Gansen, F.* ; Severin, F. ; Schleidgen, S.* ; Marckmann, G.* ; Rogowski, W.H.

Lethal privacy: Quantifying life years lost if the right to informational self-determination guides genetic screening for Lynch syndrome.

Health Policy 123, 1004-1010 (2019)
DOI PMC
Open Access Green möglich sobald Postprint bei der ZB eingereicht worden ist.
Genetic relatives of hereditary colorectal cancer patients with Lynch syndrome (LS) are at risk of cancer. Testing both colorectal cancer patients and relatives of mutation carriers for LS allows targeted prevention. However, this could mean disclosing sensitive health data to family members. In light of potential trade-offs between cost-effectiveness and patient privacy, this study investigates the implications of increasing test uptake in Germany.Out of 22 screening strategies for LS, the non-dominated and current German strategies were assessed from the perspective of the statutory health insurance. Life years gained by increased prevention were estimated with Markov models. The effects and implications of different test uptake rates in index patients and their relatives were investigated by scenario analysis.Privacy limitations could yield health gains of up to 2500 undiscounted life years for first-degree relatives of index patients and substantially improve cost-effectiveness. However, this approach may contradict the right to informational self-determination.This study demonstrates the effect higher LS test uptakes could have on the lives and rights of colorectal cancer patients and their relatives. It shows potential conflicts between the efficient use of health care resources on the one hand and reasonable consideration of patient autonomy on the other.
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Publikationstyp Artikel: Journalartikel
Dokumenttyp Wissenschaftlicher Artikel
Schlagwörter Lynch Syndrome ; Screening ; Cost-effectiveness ; Informational Self-determination ; Germany; Nonpolyposis Colorectal-cancer; Guidelines; Management
ISSN (print) / ISBN 0168-8510
e-ISSN 1872-6054
Zeitschrift Health Policy
Quellenangaben Band: 123, Heft: 10, Seiten: 1004-1010 Artikelnummer: , Supplement: ,
Verlag Elsevier
Verlagsort Elsevier House, Brookvale Plaza, East Park Shannon, Co, Clare, 00000, Ireland
Begutachtungsstatus Peer reviewed
Institut(e) Institute of Health Economics and Health Care Management (IGM)