Category Archives: Scientist/layperson relations

Language barriers and human subjects research.

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Over at On Becoming a Domestic and Laboratory Goddess, Dr. Isis looks at challenges of opening up participation in human subjects research to potential subjects who are not fluent English speakers:

When one enters the university hospital here at MRU, there are a number of skilled and qualified translators that are available to help patients that can’t dialogue in English to communicate with health care staff. They are able to sufficiently translate documents to allow a patient to provide some reasonable level of consent (my M.D. blog buddies can debate the quality of said consent). There is no infrastructure like this in research at most major research universities. Consent forms are written in English. Even if I could provide verbal translation for this man, it would not be ethical for him to sign a document in a language he cannot read himself and understand. Thus, it all more or less becomes a moot point. Beyond that, while I am a fluent Spanish speaker, I am not a qualified medical interpreter. I have no idea how to say “indwelling arterial catheter.” Babelfish says it’s, “catéter arterial dejado en un órgano.” I know that can’t be right, but who am I to question Babelfish?. Even if I were completely confident saying, “We are studying the physiological effect of [Dr. Isis’s favorite stimulus] on vascular function” in Spanish, it’s not the best use of my time as a researcher (unless one of you folks want to write me in for 10% effort, and then I will make sure I learn to say it).
So, the question is, is there an ethical issue here at all … ? The National Institutes of Health mandate the inclusion of minorities in human research studies. In our area, members of the major minority groups often do not speak fluent English. However, the translation of study documents and the hiring of an interpreter to help with the consent is expensive and I have never known an investigator to include a translator in a budget when they could have a technician. Furthermore, if you are willing to translate a consent form into one language, what about all of the other languages that might be spoken in the area around where the study is being conducted, no matter how rare? Indeed, most people I know make the decision that the ability to understand and communicate in English at a 6th grade level is a criteria for participation.
Yet, if the ability to speak English is a criteria for participation, then we by default fail to include particular groups in research cohorts. We’re back to research cohorts being comprised of middle-aged white men.

(Bold emphasis added.)
It looks to me like there is an ethical issue here. Plus, I think I see a scientific issue. Together, the two kinds of issues make me think that tackling the issue of translation should be a priority for researchers (and for the agencies funding their work).

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Honorifics, credentials, and respect.

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There’s a lively discussion raging at the pad of Dr. Isis (here and here) about whether there isn’t something inherently obnoxious and snooty about identifying oneself as having earned an advanced degree of any sort. Commenter Becca makes the case thusly:

“Why are people threatened by the idea that a profession ought to have professional standards, anyway?”
1) It gives the gatekeepers even more power than they already have. Given a world where professional credentials are denied to certain groups, it can get a bit ugly. I think the worst part is that people who are traditionally trodden upon, because they fought so hard to get the darn credential, end up being the ones most viciously fighting against respect for people without the credentials.
2) I’m not horribly opposed to professional standards in general, I just don’t think they should necesarily apply to researchers. If an MD doesn’t know what she’s doing, she kills people. If a scientist doesn’t know what she’s doing, she can change the status quo by doing something incredibly novel that others couldn’t imagine (not that it’s the most likely scenario; the most likely scenario is she will fall flat on her face… but there is an important distinction nonetheless). Heck, a kid in a science fair can discover something new (ocassionally, at the highest levels like Westinghouse, even something that academics should recognize- something publishable).
Ultimately, we wouldn’t be having this conversation if we didn’t take “Dr.” as a proxy for respect. No one will ever earn my respect by spending X years in school. Plenty of people without PhDs will earn it.
I’ve met very few PhDs who have unearned my respect for their hard work and intelligence that got them that degree (note the distinction between symbol = degree and reality = character). But there have been a few. I feel no obligation to call them “Dr.”.
“Seriously, what is the problem with recognizing expertise, hardwork, perseverence, and yes, intelligence? Why is that not progressive?”
There’s nothing wrong with it, and a great deal right!
But the relationship between schooling, expertise, hardwork, perserverence and intelligence and the number of letters displayed after your name is not a one to one function. Anyone who says otherwise is selling something (most likely a diploma).
“Ms. Manners would suggest that the polite thing to do would be to inquire of Dr. Biden which she would prefer, and (so long as the preference is for an honorific she has earned) use that.”
Did you mean Miss Manners? On the original discussion I posted her commentary on this. It can be summed up as: if someone wants to use a title, give it to them. If you are thinking of your own title, however, it’s a tad crude to draw excessive attention to your need for status.

I’m sympathetic to Becca’s points here, so I want to explore why it is I find myself leaning in the other direction on the appropriateness of “Dr.” as an honorific.

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Won’t someone think of the children?

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Around these parts, folks sometimes get het up about issues like scientific literacy (or lack thereof) in the general public, public interest (or lack thereof) in matters scientific, and whether scientists have the chops to communicate information clearly to non-scientists.
It’s worth remembering that a large group of non-scientists are kids, and that they are actively sucking information from wherever they can get it — parents, teachers, television, internet, even books.
Ahh, books. We like books. Books can get kids interested and excited about a topic even in the absence of an adult expert or enthusiast in the vicinity.
So it’s a good thing if the books are actually providing information rather than misinformation. And this is why Miriam Axel-Lute at Strollerderby would like to have a word with children’s book authors. Specifically, she’d like them to cool it with their persistent mistakes about the natural world:

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What science, engineering, and medicine topics matter most to you?

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I’ve been asked by the National Academies of Science to let you all know about a survey in which they’d like you to participate.
Yes, you!
Here’s the blurb:

What topics in science, engineering, and medicine matter most to you? The National Academies are interested in developing useful and engaging print and web-based educational materials on the topics that you’d like to learn more about. They invite you to participate in a brief survey. You can find that survey here.
In the 2-minute survey you’ll be presented with a list of topics and asked to select the five that matter most to you. At the end, you can see how your answers compare with the results so far. And you can enter a drawing to receive a National Academies tote bag!
Let the National Academies know what topics you think they should focus on so they can be sure to provide you with materials that are informative and useful. Your participation is greatly appreciated.

Whether you’re a scientist or a non-scientist, if you’re reading this blog chances are that you think there’s something interesting, important, or fun about science. You probably also care at least a little about whether the public can find objective, reliable resources about complex topics. So take two minutes and participate in the survey. (Ten lucky survey participants will even win a National Academies tote bag!)

The challenges of dialogue about animal research.

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Earlier this month, I wrote a post on California’s Researcher Protection Act of 2008, which Governor Arnold Schwarzenegger signed into law on September 28. There, I noted that some opponents of the law expressed concerns that the real intent (and effect) of the law was not to protect those who do academic research with animals, but instead to curtail the exercise of free speech. I also wrote:

I’m left not sure how I feel about this law. Will it have a certain psychological value, telling researchers that the state is behind them, even if it doesn’t actually make much illegal that wasn’t already illegal? Will it end up curtailing free speech, possibly driving more people to pursue “direct actions” against researchers because their attempts at dialogue are frustrated?

In comments on this post, Clinton raised some important issues about what is — and is not — involved in a dialogue, especially around the question of research with animals. Clinton wrote:

Why is it when you write “dialogue” what I read is “getting their way”?
There is no problem with the dialogue. Particularly in these days of the internets and blogz and all that, people who oppose the use of animals in research can sound off to their heart’s content. It is very likely they can find a venue for dialog with animal research supporters as well. They are free to lobby their local Congressional representative. With just a little effort they can probably get on their local nightly news. “Dialogue” is freely available.
People on the animal rights bandwagon who are “driven to direct action” are not being driven by a failure of dialogue but rather by a failure to get their way. It is a failure on their part to convince a majority that they are correct in their extremist views.

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Conditions for ethical therapeutic use of a placebo.

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Jake has a great post up today about the frequency with which American internists and rheumatologists prescribe placebos and the ethical questions this raises. Jake writes:

For my part, I don’t think I would be comfortable deceiving my patient under any circumstances. I see my role as a future physician partly as a healer but also as an educator. Patients — particularly patients with intractable chronic illnesses — want to understand what is happening to them. I almost feel like in deceiving them, I would be denying them that small measure of control — that small measure of dignity — that is vital to feeling like a complete person, even in the face of a life destroying illness. The ability to make decisions for yourself is an empowering feeling. You only take that away if you are absolutely convinced — as in the case of dementia or severe mental illness — that someone is completely incapable.

The whole post is well worth reading. But I’m wondering whether there couldn’t be some conditions under which use of a placebo wouldn’t violate a patient’s dignity.

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Scientific literacy: a comment on Revere’s rant.

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Over at Effect Measure, Revere takes issue with a science educator’s hand-wringing over what science students (and scientists) don’t know. In a piece at The Scientist, James Williams (the science educator in question) writes:

Graduates, from a range of science disciplines and from a variety of universities in Britain and around the world, have a poor grasp of the meaning of simple terms and are unable to provide appropriate definitions of key scientific terminology. So how can these hopeful young trainees possibly teach science to children so that they become scientifically literate? How will school-kids learn to distinguish the questions and problems that science can answer from those that science cannot and, more importantly, the difference between science and pseudoscience?

Revere responds:

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Schwarzenegger signs Researcher Protection Act of 2008.

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The past couple years in California have been scary ones for academic researchers who conduct research with animals (as well as for their neighbors), what with firebombs, home invasions, significant intentional damage to their properties and threats to their safety.
In response to a ratcheting up of attacks from animals rights groups, universities have lobbied for the Researcher Protection Act of 2008, which Governor Arnold Schwarzenegger signed into law on September 28.

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