Tag: ethics

Medical Ethics & Patient-Provider Communication

There are four primary principles for ethical decision-making in health care; however, these four principles do not necessarily yield the most beneficial results for trans youth or bodies that exist in contradistinction to state controlled modes of life. In essence, these bodies are unruly (or unrule-able), but the state continues to control them within the biopolitical frame, where biopolitics refers to the state’s ability to control the way its subjects live. Susan Stryker expands on Foucauldian biopolitics, with a specific trans studies bent, to describe it as “the calculus of costs and benefits through which the biological capacities of a population are optimally managed for state or state-like ends.” The medical-industrial complex works within this frame to manage the modes of life for trans youth, relying on non-maleficence and a paternalistic notion of future expectations to continually withhold medical intervention. Through withholding medical intervention, the state continually retains the ability to name and define trans youth within the gender framework—which isn’t to mention the biopolitical control of scientific claims to a “biological sex” or the medical narratives required to achieve intervention even for adults.

The four primary principles of health care ethics, referenced previously, are (1) respect for autonomy, (2) justice, (3) beneficence, and (4) non-maleficence. The principle of respect for autonomy refers to an individual’s ability to make decisions about their own body without constraints and refers to the ability to act freely (Beauchamp, 2007). Within the biopolitical framework, there are clearly constraints placed on the individual by the state, limiting the various modes of life that should be available to the autonomous individual. Further, for any youth, autonomy is diminished because of parental control. Nonetheless, informed consent in the medical setting provides the illusion of autonomy, though informed consent also positions the question of adequate information. Within the doctor-patient power relation, doctors are able to establish what counts as truth and the state determines what counts as adequate information, allowing for continued constraints on various modes of living that are unruly. For example, misinformation provided before receiving an abortion.

Considerations for Ethical Research and Medical Publishing: Part II

Last week I touched on the way in which pharmaceutical marketing and research activities are separated to decrease the chance of bias or unethical practices in medical research. Today I want to briefly introduce some other guidelines that exist to regulate and guide medical research and publishing.

The International Committee of Medical Journal Editors (ICMJE) is one of the leaders in establishing guidelines and recommendations for ethical medical research practices, including both the way the research is conducted, as well as the way in which the results are reported and published. Major medical journals, such as JAMA, the New England Journal of Medicine, the British Medical Journal, and more, require that studies published in their journals abide by these ethical guidelines.

Contrary to what had previously occurred throughout the history of medical research and publishing, individuals and organizations that conduct medical research are now obligated to publish all of their results (even if they’re negative). This newer industry norm was implemented in response to critiques of companies who selectively published only the studies or trials that showed their product in a positive light, a practice that is now considered biased, misleading, and incredibly unethical.

Anti-bribery statutes and requirements to disclose payments and other transfers of value from industry to health care providers, as well as the required disclosure by all authors of their potential conflicts of interest, such as being employed by the pharmaceutical industry or being in some other position to gain financially from the success or sale of a drug, are additional safeguards against biased and unethical practices.

 

For more information about the guidelines and recommendations guiding medical research and publishing, check out these resources:

Guinea pigging out

Do you know anyone who will sign up for any research study, in order to make a few bucks? This person could be a repeat or “career” research participant. The practice of participating in multiple research studies is sometimes known as “guinea pigging.”

No matter how much researchers intend to protect research participants, there are always ethical challenges to participating in multiple studies. Most studies, on their own, are considered safe with minimal risk. But participating in multiple studies exposes you to a little more risk each time.

Repeat participation also can affect the results of a study. If the same pool of people are studied each time, it’s harder to make generalizations about the results.

People who participate in a lot of research studies may somehow be different than the average person. For example, someone who has participated in a lot of weight-loss studies might have a pretty different response to a weight-loss intervention than someone who hasn’t participated in these studies.

Considering the drawbacks, why is repeat participation allowed? As Julie’s recent post on increasing awareness that research studies are safe to participate in mentioned, new research participants can be hard to come by. For many reasons, sometimes it’s easier to take a participant who has already been in other studies. Many institutions may not even have guidelines or limits on multiple participation.

Some patients may become repeat participants if they need money or medical care, which has raised concerns about whether or not low-income patients are being “induced” to participate.

On the other hand, higher payments for riskier research may actually tip off patients to the riskiness of the research. This can help people of any income level weigh the costs and benefits appropriately.

If you’re interested in learning more, check out this video of a lecture at the National Institutes of Health (57 minutes) on the ethics of multiple study participation.

What do you think about repeat participation? What do you think we can do to address these challenges?

Image credit: WOAW via Flickr.

Factory Farm Pig

Communicating the ill effects of factory farming

Today Gene Baur, founder of Farm Sanctuary, gave a “Lunch and Learn” talk here at the University of North Carolina. Farm Sanctuary is a group of safe haven farms for livestock rescued from “death piles” at factory farms.

The presentation focused on the bad health and environmental effects of factory farming and animal abuses in the agribusiness industry.

Education about the negative health consequences of factory farming is critical, Baur said, in order to challenge people’s assumptions that what is “bad is normal.” According to Baur, people’s empathy toward animals is “misaligned” with living in denial and not wanting to know how the animals they eat are treated.

How do we raise awareness of the health consequences of factory farming? Baur said that in his education efforts, he doesn’t try to hit people over the head with facts. People often tell him they “just don’t want to know.”

Instead, he said, people are more willing to listen to and learn from stories about the animals he has rescued and meeting the animals on his farm.

To see some of the gripping and disturbing images of livestock in factory farms from the presentation, visit Farm Sanctuary’s Photostream on Flickr. For more information about ethics research and education at UNC, visit the Parr Center for Ethics.

Stay tuned for next week when Upstream celebrates Food Day with a week of food-themed posts.

And on the lunch menu today? Vegan pizza and vegetarian subs, of course!