Category: Patient Care

sample tube in female hands with pipette.

Why We Should Care About the Move from Saliva to Living Cells in Precision Medicine

Adithi Iyer Leave a comment

By Adithi Iyer

The cultural, informational, and medical phenomenon that is 23andMe has placed a spotlight on precision medicine, which seeks to personalize medical care to each patient’s unique makeup. Thus far, advances in direct-to-consumer genetic testing have made saliva-sample sequencing services all the rage in this space, but regenerative medicine, which relies on cells and tissues, rather than saliva, now brings us to a new, increasingly complex inflection point.

While collecting and isolating DNA samples from saliva may offer a wealth of information regarding heredity, disease risk, and other outflows of the “instruction manual” for patients, analyzing cells captures the minutiae of patients that goes “beyond the book” and most closely informs pathology. Disease isn’t always “written in the stars” for patients. Epigenetic changes from environmental exposures, cell-to-cell signaling behaviors, and the mutations present in diseased cells all profoundly inform how cells behave in whether and how they code the instructions that DNA offers. These factors are critical to understanding how disease materializes, progresses, and ultimately responds to treatment. This information is highly personal to each patient, and reflects behavioral factors as well as genetics.

Regenerative medical technologies use cell- and tissue-based methods to recapitulate, bioengineer, and reprogram human tissue, making a whole suite of sci-fi-sounding technologies an ever-closer reality. With cell-based and other regenerative therapies entering the market (making up an entire FDA subgroup), it well worth considering how cell-based medicine can advance the world of personalized consumer testing. In other words, could a corporate, direct-to-consumer cell-based testing service be the next 23andMe? And what would that mean for patients?

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Mushrooms, capsules, and dropper bottle.

Psychedelics Are Cheap. Psychedelic Treatment Is Not.

Vincent Joralemon Leave a comment

By Vincent Joralemon

Psychedelics hold immense potential to address an array of conditions that are otherwise challenging to treat, but accessing these therapies can be costly, which means that potential benefits will be stratified along the lines of socioeconomic status.

This is an acute concern, because many with conditions that psychedelics may help to treat — such as post-traumatic stress disorder, postpartum depression, treatment-resistant depression, and alcohol use disorder — lack the resources to pay for effective health treatments.

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Hand with a red napkin washes the chalk board.

A European Cancer Survivors’ Right to be Forgotten?

Hannah van Kolfschooten Leave a comment

By Hannah van Kolfschooten and Mirko Faccioli

There are currently over 12 million cancer survivors in Europe. Due to improving cancer screening methods and medical treatment, this number is expected to grow every year. Former cancer patients often face multiple forms of discrimination throughout their lives. Many commercial companies make long-term cancer survivors “pay twice” – while having similar life expectancies as their peers, they are denied access to key services because of their former cancer status.

To combat this unfair practice, some European countries are establishing a “cancer survivors’ right to be forgotten,” also referred to as the “oncological right to be forgotten.” Italy’s parliament just passed a law to establish the right. Patients’ rights organizations and EU institutions are pushing for a “European cancer survivors’ right to be forgotten.” This post outlines the purpose of such a right and flags potential challenges in its adoption.

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Health visitor and a senior woman during home visit.

Caring for Patients with Serious Illness: Insights from Kristofer Smith

The Petrie-Flom Center Staff Leave a comment

Kristofer Smith, MD, MPP is the Chief Medical Officer of Landmark Heath, where he oversees efforts to establish a high-quality and clinically effective home-based medical care model for patients with serious illness.

We sat down with Dr. Smith to discuss his experience caring for patients with serious illness and developing programs to provide health care at home, among other topics. The following interview has been edited and condensed. Read More

the homepage of the PubMed website is seen on a computer screen through a magnifying glass.

On Searching for the Unknown with Unspeakable Names: Searching PubMed for Disability Research

The Petrie-Flom Center Staff Leave a comment

By P.F. Anderson and LaTeesa James

PubMed special queries are master search strategies on common, important, but challenging health topics, which are usually peer-reviewed. Disability certainly qualifies as a common, important health topic that is challenging to search – and yet, no PubMed special query exists for it. 

This oversight is concerning. Put simply, it’s important that disability as a topic is easily identifiable in the scholarly record. While there are specialized databases for the topic, such as NARIC’s REHABDATA, the global research community is most likely to begin with PubMed. Currently, structured vocabulary terms related to disability are scattered throughout PubMed’s medical subject heading (MeSH) trees, often without cross references to facilitate discovery, forcing discovery to largely depend on the unstructured language of whatever words were chosen by the authors to describe their research topics. This lack of consensus and consistency across professional disability terms, categories, and definitions contributes to a lack of comparability, discoverability, and access for disability data as well as research.  

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line drawing of computers, tablets, and televisions.

Autistic Screen Time: Swipe Left on Stigma

The Petrie-Flom Center Staff Leave a comment

By Maxfield Sparrow

I am an autistic person who has been using the internet as a social prosthetic device since 1983. I was born in 1967 and began therapy in 1972, so the iPad didn’t exist and the only screen time parents worried about was the five channels of broadcast television available twenty hours a day. TV was fine, but my real passion was books. I was hyperlexic and from a very early age I had an unquenchable thirst for written language. My obsession with reading was considered pathological, and adults took my books away to try to force me to socialize with other children instead.

It didn’t work. But it is sadly common that those of us with developmental disabilities are held to higher standards than everyone else. As children, once we are identified, everything about us is scrutinized. Well-meaning adults, fearing for our future, hold us to higher standards of everything from politeness to academic discipline to the age-appropriateness of our interests to the ways we move through the world. We’re not allowed to “get away with” the things non-disabled kids do every day.

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Cover image of Ashley Shew's book, Against Technoableism.

Symposium Introduction: Addressing Technoableism: Reforming Infrastructure and Disability Representation

The Petrie-Flom Center Staff Leave a comment

By Ashley Shew

Far too often, when people write and talk about technology and disability, stories are deeply shaped by ableism. Often when devices are painted as “solving the problem of disability” or “empowering disabled people,” they suggest that being disabled is itself a problem, and that people should try to be as nondisabled as possible. But pretending to be nondisabled is not a great way to live — to be in hiding or denial, to not give your body and mind the rest they deserve, to hurt yourself trying to live up to expectations and infrastructure sometimes literally designed to keep you out. Technology itself gets painted as heroic and important — and, please, investors, throw more money at the tech industry — when any disability is mentioned. Disability is often appealed to as a justification for technological development, and as a moral imperative toward investment in technological research. This is technoableism as I describe it in my book, Against Technoableism: Rethinking Who Needs Improvement. 

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a man waves an intersex-inclusive progress pride flag in the wind on the sky.

Certainty and Uncertainty in Trans-Intersex Science Politics

The Petrie-Flom Center Staff Leave a comment

By Maayan Sudai

Joanna Wuest’s Born This Way: Science, Citizenship, and Inequality in the American LGBTQ+ Movement describes the evolution of the “born this way” framework through pivotal moments in the history of the LGBTQI+ movement.

A central theme of the book’s analysis is the role that “certainty” and “uncertainty” play in the legitimation of science-based policy regarding sexuality and gender issues. Uncertainty of what might happen has been pitted against LGBTQI+ reforms, from when conservative researchers and practitioners argued the exposure of young children to an openly gay guardian or schoolteacher could be harmful (p.92), to present-day attempts to leverage uncertainty to block trans access to sex-segregated bathrooms, prisons, and shelters (p.181).

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