What Goes Unsaid: Self-Serving Health Research

“The realization that the world is often quite different from what is presented in our leading newspapers and magazines is not an easy conclusion for most educated Americans to accept,” writes Ron Unz. He’s right. He provides several examples of the difference between reality and what we are told. In finance, there are Bernie Madoff and Enron. Huge frauds are supposed to be detected. In geopolitics, there is the Iraq War. Saddam Hussein’s Baathists and al-Quada were enemies. Invading Iraq because of 9/11 made as much sense as attacking “China in retaliation for Pearl Harbor” — a point rarely made before the war. In these cases, the national media wasn’t factually wrong.  No one said Madoff wasn’t running a Ponzi scheme. The problem is that something important wasn’t said. No one said Madoff was running a Ponzi scheme.

This is how the best journalists (e.g., at The New Yorker and the New York Times) get it wrong — so wrong that “best” may be the wrong word. In the case of health, what is omitted from the usual coverage has great consequences. Health journalists fail to point out the self-serving nature of health research, the way it helps researchers at the expense of the rest of us.

The recent Health issue of the New York Times Magazine has an example. An article by Peggy Orenstein about breast cancer, meant to be critical of current practice, goes on and on about how screening has not had the promised payoff. As has been widely noted. What Orenstein fails to understand is that the total emphasis on screening was a terrible mistake to begin with. Before screening was tried, it was hard to know whether it would fail or succeed; it was worth trying, absolutely. But it was always entirely possible that it would fail — as it has. A better research program would have split the funds 50/50 between screening and lifestyle-focused prevention research.

The United States has the highest breast cancer incidence (age-adjusted) rates in the world — about 120 per 100,000 women, in contrast to 20-30 per 100,000 women in poor countries. This implies that lifestyle changes can produce big improvements. Orenstein doesn’t say this. She fails to ask why the Komen Foundation has totally emphasized cure (“race for the cure”) over prevention due to lifestyle change. In a long piece, here is all she says about lifestyle-focused prevention:

Many [scientists and advocates] brought up the meager funding for work on prevention. In February, for instance, a Congressional panel made up of advocates, scientists and government officials called for increasing the share of resources spent studying environmental links to breast cancer. They defined the term liberally to include behaviors like alcohol consumption, exposure to chemicals, radiation and socioeconomic disparities.

Nothing about how the “meager funding” was and is a huge mistake. Xeni Jardin of Boing Boing called Orenstein’s article “a hell of a piece“. Fran Visco, the president of the National Breast Cancer Coalition, praised Orenstein’s piece and wrote about preventing breast research via a vaccine. Jardin and Visco, like Orenstein, failed to see the elephant in the room.

Almost all breast-cancer research money has gone to medical school professors (most of whom are men). They don’t do lifestyle research, which is low-tech. They do high-tech cure research. Breast cancer screening, which is high-tech, agrees with their overall focus. High-tech research wins Nobel Prizes, low-tech research does not. For example, those who discovered that smoking causes lung cancer never got a Nobel Prize. Health journalists, most of whom are women, apparently fail to see and definitely fail to write how they (and all women) are harmed by this allocation of research effort. The allocation helps the careers of the researchers (medical school professors); it hurts anyone who might get breast cancer.

13 Responses to “What Goes Unsaid: Self-Serving Health Research”

  1. Alex Chernavsky Says:

    I think one possible reason for the lack of research on preventive measures is that the researchers may figure that the lifestyle changes would turn out to be measures that would be unpalatable to the general public (things like eating less processed food, drinking less alcohol, exercising more, etc.) and hence would not gain widespread acceptance.

  2. Steve Johnson Says:

    What Alex said but even more so because it’s a women’s cancer and women react angrily and emotionally to the idea that anything is their fault.

    Pop culture example from an episode of Sex and the City:

    Samantha: I don’t understand how this happened to me.
    Dr: It could be genetics, but since there’s no breast cancer in your family, it could be a variety of factors,
    - diet, lifestyle choices.
    Samantha: – Lifestyle choices?
    Dr: Some studies have shown women who haven’t had children
    have an increased chance of getting it.
    Samantha: I see.
    So I brought this on myself?
    Dr: No, I’m just giving you the basic…
    Samantha: I think we’re done here.
    Dr: Maybe I wasn’t clear.
    Samantha: Give me my chart. I’m going to find some woman doctor, some hot woman doctor who understands what this is all about.

    Yes, it’s fiction but it’s popular fiction and this is not the only place where you’ll hear that same attitude.

    A cure fits much better into the mental model of the world that women tend towards – if something is wrong it’s someone else’s job to figure out how to fix it.

  3. Toddy Cat Says:

    Of course, one of the reasons that “lifestyle modification” has gotten a bad rap over the last fifty years is that so much of the advice was either oversimplified or just flat-out wrong. In fact, one could make the argument that smoking is almost the only thing that the “public Health” community has gotten right in the last fifty years – that’s an exaggeration, but not much of one. So naturally, people are a bit skeptical that this time, the authorities finally have it right. And God forbid that that advice might offend someone’s ideological prejudices, as seen above.

  4. Nancy Lebovitz Says:

    It might be pollutants rather than lifestyle.

    What about *really* self-interested medical research? That is, research on a problem the researcher or a loved one of the researcher has?

  5. dearieme Says:

    “The United States has the highest breast cancer incidence (age-adjusted) rates in the world — about 120 per 100,000 women, in contrast to 20-30 per 100,000 women in poor countries”: seek and ye shall find. Screening is bound to put up the number of cases diagnosed, isn’t it? It may extend nary a life, but at least it’ll find tumours, however small or slow-growing.

    Also
    http://drmalcolmkendrick.org/2013/09/19/deadly-medicines-and-organised-crime-how-big-pharma-has-corrupted-healthcare/#comments

  6. Jay Says:

    Hi Seth,

    I think a big part of the incidence of Breast Cancer might have something to do with the populations of individuals who carry harmful mutations of BCRA1 & 2, in particular, Ashkenazi Jews.

    From the cancer.gov web site:

    1. How much does having a BRCA1 or BRCA2 gene mutation increase a woman’s risk of breast and ovarian cancer?

    A woman’s lifetime risk of developing breast and/or ovarian cancer is greatly increased if she inherits a harmful mutation in BRCA1 or BRCA2.

    Breast cancer: About 12 percent of women in the general population will develop breast cancer sometime during their lives (4). By contrast, according to the most recent estimates, 55 to 65 percent of women who inherit a harmful BRCA1 mutation and around 45 percent of women who inherit a harmful BRCA2 mutation will develop breast cancer by age 70 years (5, 6).

    2. Are mutations in BRCA1 and BRCA2 more common in certain racial/ethnic populations than others?

    Yes. People of Ashkenazi Jewish descent have a higher prevalence of harmful BRCA1 and BRCA2 mutations than people in the general population. Other ethnic and geographic populations around the world, such as the Norwegian, Dutch, and Icelandic peoples, also have higher prevalences of specific harmful BRCA1 and BRCA2 mutations.

  7. Seth Roberts Says:

    To finish the BRCA argument you need to say how common the two mutations (BRCA1 and BRCA2) are, so we can get some idea of what fraction of breast cancer cases they are involved in.

  8. Seth Roberts Says:

    I meant “lifestyle” to include all sorts of environmental changes, including pollutants. Maybe lifestyle was the wrong word. Pollutants can be avoided — I try to avoid them in Beijing — just as lifestyle can be changed.

  9. Seth Roberts Says:

    Public health researchers have also been right about the contribution of low folate to birth defects. I believe that epidemiologists will turn out to be right about the connection between poor sleep and depression — a very important clue to what causes depression. Also about selenium and cancer. However, I agree, there is vast room for improvement.

  10. JM Says:

    Wow, Steve, way to accuse an entire gender of being angry and emotional when confronted with a devastating diagnoses – I think that probably applies to a lot of people (men and women) who are told they have a possibly fatal illness. And using Sex and the City as an example doesn’t really help your argument.

  11. Nancy Lebovitz Says:

    Jay, there are about 5 million Jews in the US out of a total population of about 300 million– I don’t think that’s enough to affect the breast cancer stats much.

    Here’s a weird one: cancer rates are *positively* corelated with income. http://www.who.int/gho/ncd/mortality_morbidity/cancer_text/en/

    More longevity? More diagnosis? Something quite mysterious?

    Map of states:

    http://www.cdc.gov/cancer/breast/statistics/state.htm

    Unfortunately, most maps are by country– this strikes me as fairly useless.

    Seth, what do you do to avoid pollutants in China?

    Seth: I heavily filter the air in my apartment.

  12. Jay Says:

    Hi Seth, sorry I left that part out.

    From:

    http://www.jewishgenetics.org/?q=content/ashkenazi-jews-and-brca1-and-brca2

    “Various studies have examined the ethnic distribution of BRCA1 and BRCA2 mutations associated with breast and ovarian cancer. Three mutations in these genes (185delAG and 5382insC in BRCA1 and 6174delT in BRCA2) occur at an increased incidence in the Ashkenazi Jewish population, estimated at 2.5% (or 1 in 40), compared to less than 1% in the general population.”

    As for the number of Jews, the 5 million number may seem low, but I don’t think that number includes the population who may be descendants of Jews (and thus more likely to carry at least part of the genetic profile associated with the cultural group) yet not qualify as technically “Jewish”. I count myself as part of this group.

  13. Jeff Winkler Says:

    Speaking of life-style modification… Sanjiv Shah improved sleep quality by (Boston QS: http://www.youtube.com/watch?v=VDQ0TPxHn0Q) by blocking blue light at night. Blue light blocks melatonin production. He reduced sleep latency and increased deep sleep — measured by a Zeo and Fitbit.

    Shift work in nurses for more than 30 years has a breast cancer risk ratio of 1.36 – http://www.ncbi.nlm.nih.gov/pubmed/11604480?dopt=Abstract

    Profoundly blind women have a 50% reduction in breast cancer — http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2363754/

    It would make sense that income upregulates electronics such as tablets, lowering melatonin production with late-night use.