Tag: preventive medicine

Bioethics Blogs

Undermining the USPSTF: The most important stakeholders are the patients

A strange “health care” drama plays out daily in our clinics and hospitals. A healthy person has a medical test done (even though he or she is healthy): a blood test, a chest x-ray or mammogram, maybe an ultrasound of some body part. The test comes back abnormal. The patient (for she has now gone from being a healthy person to being a patient) is struck with worry, and undergoes a further round of testing to determine whether the initial, “screening” test was accurate. This more invasive, risky definitive testing causes the patient pain, complications, infections, further procedures to fix the complications. But the testing shows that the original screening test was wrong, and the patient is relieved of their worry and overcome with a sense of gratitude: “Yes, the follow-up surgery was painful, but at least it’s not cancer.” However, notice what caused the worry in the first place: not some symptom that they were experiencing, but a test that was performed on a healthy person. What a marvelous bit of sorcery: we take a happy patient, create unnecessary worry, then win their undying gratitude by performing risk-laden procedures on them to remove their worry!

There is something very intuitive about the concept that detecting a disease (especially cancer) early leads to better outcomes, that screening tests are inherently good. Yet when one studies the actual outcomes of implementing mass screening programs in a population of people who have no signs or symptoms of a particular disease, one finds to one’s surprise that, not infrequently, more people are harmed by our screening test than are helped (See: PSA testing, carotid ultrasounds, annual stress tests, etc).

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Is Social Media Making Us Lonelier?

Initially, most of us thought that Facebook, Instagram, Twitter, and other social media applications would help to bring people together. And, yes, in many instances that has been true. Such apps have made it possible—even simple—to catch up with former classmates living thousands of miles away, share a video of your baby’s first steps with relatives near and far, or strike up new acquaintances while discussing the stock market or last night’s ballgame. Yet, a new NIH-funded study suggests that social media may also have the power to make people feel left out and alone.

Based on a nationwide survey of more than 1,700 young adults, researchers found that individuals who were the heaviest users of social media were two to three times more likely to feel socially isolated than those who used little to no social media [1]. And that’s a concern to those of us in the medical field: previous research has linked social isolation to worsening physical and mental health, and even an increased risk of death [2,3]. In fact, some experts have gone so far as to label loneliness a major public health concern.

The new study, reported in the American Journal of Preventive Medicine, was led by Brian Primack and his colleagues from the University of Pittsburgh. They set out to look specifically at social media use and its possible association with feelings of social isolation in young adults.

To do so, they randomly surveyed 1,787 male and female young adults about their use of 11 popular social media applications.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Coke and Pepsi Give Millions to Public Health, Then Lobby Against It

The findings, published on Monday in the American Journal of Preventive Medicine, document the beverage industry’s deep financial ties to the health community over the past five years, as part of a strategy to silence health critics and gain unlikely allies against soda regulations.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Rethinking Rescue Medicine: Issues of Justice and a Preventive Medicine Role for Emergency Medical Services

by Kelsie Mietla• Emergency medicine, both pre-hospital through emergency medical services (EMS) and in the emergency department (ED), is focused on immediate response to a variety of different illnesses and injuries. Through the Emergency Medical Treatment and Active Labor Act (EMTALA), all patients presenting to an ED are guaranteed to receive assessment and stabilizing treatment […]

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Three Millimeters by Christine Labuski

The first time I encountered Judy I was with Dr. Erlich, gathering fact sheets about vulvar pain conditions. Dr. Robichaud, the other physician at the Vulvar Health Clinic (VHC)[i], and a new resident entered the pod in a white-coated blur—animatedly conferring, hastily scribbling on forms that they were pulling from file cabinets, and getting on the phone to arrange an obviously urgent surgery for the woman whose story they had just heard. Amidst the chaos, Dr. Robichaud told us that their patient—Judy—had one of the severest cases of lichen planus (LP) that she’d ever seen: her labia were so fused together that she was urinating through a three-millimeter vulvar opening. The procedure that Dr. Robichaud was scheduling would both surgically correct the problem and evaluate how much of Judy’s vaginal patency it was possible to restore.

Judy was not the first woman I’d met whose genitalia were a source of distress. Prior to the fieldwork that I conducted in the VHC, I had been a nurse practitioner, and for almost fifteen years I managed the gynecological needs of uninsured and low-income women in several US cities. During those years, I observed that the majority of my patients knew little about their genital anatomy and I frequently attended to the repercussions of this: removing tampons or condoms believed by patients to be “lost” in their vaginas; excising vulvar warts for patients who struggled to understand their mode of transmission; and describing, often after the fact, the important differences between hormonal and barrier contraceptive methods regarding pregnancy and infection.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Cost of Ethical Review, Part III: Hindering HIV Prevention

Risk-averse IRBs are hindering potentially life-saving research, write Brian Mustanski and Celia Fisher. “Critical advances in HIV prevention among AMSM [adolescent men who have sex with men],” they note, “have been impeded by the failure of IRBs to apply federal regulations permitting adolescents to self-consent to research without parental involvement.”

[Mustanski, B., & Fisher, C. B. (2016). HIV Rates Are Increasing in Gay/Bisexual Teens: IRB Barriers to Research Must Be Resolved to Bend the Curve. American Journal of Preventive Medicine, In Press. doi:10.1016/j.amepre.2016.02.026.]

To understand how to stop HIV transmission among teens, Mustanski, Fisher, and other researchers need to be able to talk freely with those teens. And the teens are often willing to talk, so long as they don’t need parental permission to do so. But most won’t talk if the researchers must get permission from their parents, and the minority who are willing to involve their parents are not representative of the larger group, thus skewing any sample and reducing the effectiveness of any intervention.

The IRBs that demand parental consent are ignoring expert guidance. More than ten years ago, Mustanski and Fisher note, the Secretary’s Advisory Committee on Human Research Protections recommended that these kinds of studies be allowed to proceed without parental consultation. I wonder how many IRBs are even aware of such guidance; recall Klitzman’s findings that IRB fears may not be “realistic or reality-based.”

In any case, these IRBs are jeopardizing the health and even the lives of America’s youth. As Mustanski and Fisher conclude,

IRB barriers to self-consent deprive AMSM of their right to participate in trials that will protect them from receiving developmentally untested, inappropriate, and unsafe interventions and is a clear case of scientific inequity driving health inequities.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Universal Newborn Genome Sequencing and Generation Alpha

I have been struggling with why the idea – and likely coming reality – of universal newborn genome sequencing disturbs me. It’s finally crystallized: the practice could create a genetic underclass.

On the day that genome sequencing of all newborns begins, a cohort of individuals about whom a tremendous amount of personal information exists will be instantly created. At the same time, the practice will establish a shrinking cohort of most of the rest of us who do not know our genome information.

A century from now, possibly everyone will have access to her or his genome data. But until then, how can we prepare to handle the avalanche of information of what I’d call, if I were a science fiction writer, “generation Alpha?”

My idea of the Alphas is inspired by the 1992 dystopian novel The Children of Men, by P.D. James. In 1994, all human sperm suddenly die, and 1995 becomes Year Omega. After that, populations plummet in the face of global infertility, with the last remaining people, the Omegas, struggling towards inevitable extinction.

What will happen in our world as the Alphas age? For now, mining sequenced genomes is experimental and seeks to end the “diagnostic odysseys” endured by patients, typically children with rare or one-of-a-kind diseases . But just as opening a magazine can reveal much more than the article one is looking for, a genome sequence provides hundreds of thousands of gene variants that might mean something about a person’s health. And so the American College of Medical Genetics and Genomics lists 56 “actionable” secondary (“incidental”) conditions, a minimal menu of conditions which doctors can prevent or treat.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

CRISPR Opportunities

Company logos

Money and deals are flowing into the companies founded on CRISPR technology, which promises to enable the precise editing of genomes.

CRISPR/Cas9 stands for “clustered, regularly interspaced, short palindromic repeat” and an associated protein (not always mentioned). A brief video introduction from UC Berkeley’s Innovative Genomics Initiative (IGI) gives an overview of the editing process. A webinar put on by Genetic Engineering & Biotechnology News, featuring Harvard professors George Church and Feng Zhang, gives more detail.

The first prominent company intending to exploit this technology was Editas, which was founded by five of the most prominent scientists in the field. Editas recently announced licensing deals with Massachusetts General Hospital, Duke University, Harvard University, and the Broad Institute, all for intellectual property related to the use of CRISPR/Cas9 as well as TALEN genome-editing technologies [press release pdfs, 1, 2, 3].

BioIt World has more about the implications of these deals for prospects of both ex vivo and in vivo drug development, and quotes CEO Katrine Bosley as saying they are “at least a couple years from the clinic.” In a press release, Bosley said:

“We all share the goal of translating this cutting-edge science into breakthrough medicines for people with genetically-driven diseases.”

Generally, Editas is looking to create “robust medicines” that will enable “the prevention and treatment of human or animal disease, and broad agricultural use.”

This superficially bland ambition has some worrying overtones. One major concern is the apparent assumption that genomics can reliably predict disease in time to prevent it, which is only true of a small number of genetic disorders.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.