Marilyn Baffoe-Bonnie: What Does It Mean to Be Cured of Sickle Cell Disease?
Marilyn Baffoe-Bonnie, Assitant Professor at Temple University – Lewis Katz School of Medicine, shared a post on LinkedIn about her recent article, published in AJOB Empirical Bioethics, adding:
“I’m excited to share that my new paper has been published online in AJOB Empirical Bioethics!
As gene therapies and stem cell transplantation transform the therapeutic landscape for sickle cell disease, what does it actually mean to be ‘cured’?
Drawing on interviews with people living with sickle cell disease, I examine how they understand and negotiate the meaning of cure.
I find that even as medicine develops increasingly sophisticated ways of intervening on disease and measuring therapeutic outcomes, the meaning of ‘cure’ remains unsettled for the people experiencing it.
Importantly, scientific and media uses of ‘cure’ do not always capture the complexities of lived experience following these therapies.
My findings invite us to think more critically about how cure is defined, communicated, and experienced, particularly as increasingly transformative therapies enter clinical practice.
I’m incredibly grateful to everyone who shared their experiences and contributed to this work!”
Title: What Does It Mean to Be Cured?: Perspectives from Individuals Living with Sickle Cell Disease
Authors: Marilyn S. Baffoe-Bonnie
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