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Challenges of Genetic Discrimination in Healthcare and Beyond for HCS Patients
Nov 23, 2024, 12:05

Challenges of Genetic Discrimination in Healthcare and Beyond for HCS Patients

Unity Health Toronto shared on LinkedIn:

“Hereditary cancer syndromes (HCSs) are inherited conditions that increase a person’s likelihood of developing cancer.

A new qualitative study led by St. Michael’s Hospital research student Ridhi G., under the supervision of Drs. Yvonne Bombard (St. Michael’s Hospital), Intan Schrader (BC Cancer) and Holly Etchegary (Memorial University, Newfoundland and Labrador), found that patients with HCSs face genetic discrimination across healthcare, insurance, employment, and family/social settings.

Patients described ‘felt’ stigma, where they felt they were being judged for their condition; and ‘enacted’ stigma, where their condition kept them from being afforded opportunities or resources, like job promotions or insurance coverage. This stigma led to participants being hesitant to share their diagnoses.

Although study participants appreciated legislation to protect against genetic discrimination such as the Genetic Non-Discrimination Act, many individuals had limited knowledge of its existence and provisions.

Researchers of the study encourage public outreach and knowledge translation efforts to improve awareness and non-discrimination legal protections for people with HCS.

Read the study. ”

“Should I let them know I have this?”: Multifaceted genetic discrimination and limited awareness of legal protections amongst individuals with hereditary cancer syndromes

Authors: Ridhi GopalakrishnanJordan SamCarly ButkowskyEmma RebleMarc ClausenSepideh RajeziesfahaniBrooklyn SparkesVernie AgudaMelyssa AronsonDerrick BishopLesa DawsonAndrea EisenTracy GrahamJane GreenChloe MightonJulee PaulingClaudia PavaoPetros PechlivanoglouCatriona RemockerSevtap SavasSophie SunTeresa TianoAngelina TilleyKasmintan SchraderHolly EtchegaryYvonne Bombard

Challenges of Genetic Discrimination in Healthcare and Beyond for HCS Patients