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My family needs more from Penn than an apology for unethical medical experiments | Opinion

Those of us who long fought for this day worried it might never come. Now Penn has to deliver.

At left, Leodus Jones in 2008, years after being experimented on by Dr. Albert Kligman; at right, his daughter Adrianne D. Jones-Alston, who has picked up his advocacy for incarcerated people and their families, in Washington, D.C. in 2021.
At left, Leodus Jones in 2008, years after being experimented on by Dr. Albert Kligman; at right, his daughter Adrianne D. Jones-Alston, who has picked up his advocacy for incarcerated people and their families, in Washington, D.C. in 2021.Read moreAdrianne D. Jones-Alston

Those of us who long fought for this day worried it might never come: Penn Medicine acknowledged and apologized for the unethical research of Dr. Albert Kligman, who without their clear consent, experimented on incarcerated Black men — including my father.

Penn’s long-awaited apology is a breakthrough in Philadelphia. As the daughter of someone harmed by Dr. Kligman’s research — and who experienced the ripple effects of that harm herself — I am heartened by the announcement and Penn’s promise to make concrete change, including ending the annual lectureship named for Dr. Kligman, renaming the Kligman Professorship for Bernett L. Johnson Jr. — a Black faculty member in dermatology and chief medical officer of the Hospital of the University of Pennsylvania — and carving out research funding for diversity and equity in dermatologic research, education, and care.

» READ MORE: Penn Medicine apologizes for notorious doctor who conducted experiments on Holmesburg Prison inmates

However, there is still work to be done. The statement from Penn Medicine dean J. Larry Jameson did not include an action plan offering restitution to the incarcerated people Dr. Kligman treated like lab rats, whose lives and families were harmed even as they were major contributors to the pharmaceutical world after Kligman developed and Penn collected royalties for Retin-A/Renova.

My father, the late Leodus Jones, dedicated decades of advocacy in Philadelphia to asking for apologies and reparations concerning Dr. Kligman’s unethical Holmesburg Prison experiments on inmates. My father’s cry for justice made me feel compelled to become the new forerunner for my family and others after his death. These experiments weigh on my family in many ways.

I don’t want to undersell the importance of this initial apology, nor the work it took. I am thankful to the University of Pennsylvania for getting here, to Allen Hornblum for his books Acres of Skin and Sentenced to Science, which shed a light on these ethical breaches, to my father for his decades of advocacy surrounding the experiments and incarcerated citizens, and to Yusef Anthony and other inmates who have shared powerful messages on their experiences as Holmesburg Prison experiment subjects.

“My father’s cry for justice made me feel compelled to become the new forerunner for my family and others after his death.”

Adrianne D. Jones-Alston

My concern is that Penn’s apology list seems to be growing so rapidly that I wonder how much resolution work will be completed, or if this is more lip service. “In 2021 alone, the Penn Museum has apologized for its “unethical possession of human remains” in its Morton skull collection and vowed to repatriate remains of anonymous Black Philadelphians, and for mishandling the remains of a Black child killed in the MOVE bombing rather than returning the remains to family. (Penn also commissioned a report on the handling of those remains, which was made public Aug. 25.)

It is vital that Penn now follows through on its commitments for its proposed reparations for the City of Philadelphia, especially at this time where we as a nation have to dig deep and make peace and collaboration between communities and their medical professionals. Trust in medicine is vital as world leaders keep pushing the COVID vaccines. We have to come to a common ground so that we can heal. Dr. Kligman’s experiments are a prime example of why Black communities “don’t trust.”

» READ MORE: Penn must cut ties with Dr. Albert Kligman, who conducted unethical human research on Black men | Opinion

After this apology, Penn has a stronger platform to change minds. It can show us that mistakes were made but are being accounted for, so we can build trust in Philadelphia toward medical research that brings cures and treatments and toward care that keeps people functioning and thriving. There is so much more work to be done here, and I’m hoping Penn can lead by example — be about it, not just talk about it. That should include putting some of the royalties from Kligman’s legacy toward direct mental health and other medical support for families like mine and that of Yusef Anthony, who still suffers from the experiment; educational scholarships for formerly incarcerated returning citizens; and a plan to bridge trust between Philly communities and medical research.

And I do have hope in solutions. I recently enrolled in a community college as the recipient of a Henrietta Lacks educational grant — named for a Black woman whose cells led to many advances in medical research but were taken without her approval and for a long time without her family’s knowledge. I’m not pleased with why the Henrietta Lacks Foundation exists, which is another example of unethical medical research. But my family and the Lacks family have important things in common. If their family can rise above the pain and scars left by medical research, then there is hope for mine.

Adrianne D. Jones-Alston began advocating for newly released citizens in the year 2012 and lives in Virginia. jonesfound0901@gmail.com