Why do parents choose not to vaccinate?

Readers of this blog will know that I have written several times about vaccinations.  I have become increasingly frustrated about the low rates of vaccinations and the sense that some people are essentially putting their heads into the sand on this important issue.  If I was forced to stake out a position then I think my underlying view was not dissimilar to the above New Yorker cartoon that has been circulating on Facebook.

There were two items on NPR this morning that discussed why, even in the face of the current Measles outbreak, parents are still failing to vaccinate their children.  Both items endeavored to understand the psychology of this resistance.  The first article by Jon Hamilton shares the story of a Mom who chose not to vaccinate her daughter because she felt that there was a risk of Autism and conversely very little risk from disease.  She was also in a group that she referred to as the  “crunchy mums” who questioned “mainstream medicine and things that aren’t natural”.

For such parents they perceived no downside risk of not vaccinating and conversely vaccinating would in essence break a covenant with the “natural” way of being that they aspired to.  In the case of the Mom in this story her daughter was subsequently diagnosed with Autism.  Because her daughter had not been vaccinated at the time of the diagnosis it was clear that there was some other as yet unknown cause for this disorder.  The Mom also kept talking through the issues with her pediatrician and over time, after becoming aware of the Autism diagnosis, made the decision to vaccinate her daughter.

The second article was by the amazing Shankar Vedantam.  Vedantam was doing a follow up story to an earlier study that showed that espousing the health benefits of vaccines to parents, that did not trust vaccines, actually made them less trusting of science and vaccines.

For these parents trying to debunk their beliefs about vaccines had the perverse result of reinforcing those beliefs.  Vedantam suggests that the way to work with these parents is to spend time trying to build a relationship with them and to truly understand their fears.  It seems to me that the pediatrician in the first story epitomized this kind of philosophy by working with the mum over a long period of time, and by keeping that relationship and the discussion open, was finally able to help the Mom get to a space where vaccinations became the right decision.

Of course the only problem with this is that it does take a long time and the current Measles outbreak is building so quickly that we know that some innocent children will be hurt.

On that somber note – have a great day.

Regards

Ken Gordon

Executive Director

The overhyping of medical research

Dear all

Michael Louella from the University of Washington shared this cautionary article about the overhyping of medical research findings.  The exaggeration that creeps into reporting of medical research falls into three categories:

1. advice (say, to stop eating eggs or to drink more coffee) that was not indicated by the scientific study,
2. stronger claims than indicated in the article (for example, saying that stress causes hemorrhoids when a study might show only that stress was associated with hemorrhoids) and
3. directly relating findings to humans, when in fact the study was performed in rats, mice or cells.

There is a lot of finger pointing associated with these errors.  Some of the fault lies on our research side of the information war.  Researchers and their media helpers summarize their findings in press (media releases) and it is often these releases that are the essential first shot in the information war.  A study published December 9 in the British Medical Journal from Petroc Sumner of Cardiff University in Wales showed that:

1. 40 % of press releases contained explicit advice not indicated in the journal article.
2. Another 33% of claims in press releases used stronger language than in the journal article.
3. Finally, 36% of press releases inferred that a finding was related to human health when the study was not actually performed in humans.

Furthermore the resulting news articles arising from these releases showed that:

1. When advice was indicated in the press release, 58% of news stories also gave advice.
2. News stories exaggerated associations 81% of the time if claims were also exaggerated in the press release.
3. And when press releases improperly extrapolated animal findings to humans, the news extrapolated too — 86% of the time.

At NWABR we try hard to help researchers get the message out about their work.  Sometimes we have advised researchers to reduce nuance to help clarity.  This new research shows that we have to be very careful with this advice as it can lead to inflated claims, misunderstanding and incorrect information – all things that actually will serve to reduce the public’s trust in this most important work.

Heavy thoughts for the season – I hope everyone has a great holiday season and here at NWABR we are excited for the new year.

Regards

Ken Gordon

Executive Director

Experts answer bioethics questions from the public

Sorensen asks for questions from the general public, and the first is from a CityClub charter member, Maryel Duzan. She asks about “the white coat problem” — described generally as biases and problems introduced by personal interaction with a doctor or scientist. Examples of the problem cited by Duzan are that some people don’t remember what they’ve been told, or feel personally compelled toward consent by this interaction.

Duzan’s question, then is: As a potential solution to the white coat problem, has anyone considered using videos to establish understanding and consent in place of a one on one interaction?

Sewards notes that “We think of consent as an on-going process.” That is, they ensure participants have an on-going understanding and that forms stay updated.

Russell, for GAPPS describes that their study coordinators know the women across a long period of time, so there are a lot of questions back and forth.

For GAPPS donors then, there is a lot of time to think about consent.

Edwards adds there are new consent forms with more options, with which you can opt into or out of different parts of the research.

Still better, some of Edwards’ bioinformatics colleagues are working on a software interface with a question and answer experience on a computer. This is to lead you through the choices and help identify what you really want in terms of consent.

Next, writer Sally James from the Northwest Science Writers Association (@jamesian on Twitter) begins: “I find the definition of ‘informed’ to be really tricky right now. For those of us familiar with proteomics (the large-scale study of proteins, particularly their structures and functions) we can imagine: can anyone right now know the ramification of giving a DNA sample?

We are on the cusp of learning so much more information, and things are changing so quickly, James summarizes: “Can anyone know what we’re consenting to?”

Edwards replies: “This is exactly why I wonder whether we’ve out grown the usefulness of classic consent. I think we’ve outrun the term ‘informed consent’. We don’t know all the risks and benefits with respect to genetic information. We’ve had a number of conferences with experts in the room … and we still cannot anticipate all the risks.”

Edwards continues: “We should shift to consenting to a process … [such as] I agree to be a part of this bank, I understand there is a governing process, and if things change you will contact me again,” rather than committing to everything in the future at this one time.

Renee Delong, Regulatory Affairs Project Coordinator at Fred Hutchinson Cancer Research Center asked “What steps do you recommend to build public trust around biorepositories?”

Delong added, “I believe in the promise of biorepositories,” while mentioning a recent New York Times article about use of the Internet as a sort of repository for patients with rare genetic disorders. These patients openly share symptoms and diaries online which researchers can then, also access.

Edwards replied that communication and being transparent, having accountability, and having systems in place to know where the data are are all essential to building trust. She also stressed that biobank experts don’t yet know all the answers and they are open to suggestions.

Edwards agreed that people are absolutely owed some results back, but noted that not everyone wants to known their own personal results. Many people just want to know how the research is going in general. Individual results may not be conclusive or relevant, but scientists can give back more in terms of general results.

To another question from Delong, Russell replies that GAPPS participant-donors can change their minds up until that specimen has been sent out for research. Samples left behind or not yet used can be destroyed, and donors can be given confirmation that it’s been done.

Sewards adds: Every consent form has the phone number of the reviewing IRB, and they would love to hear from more people! — http://www.washington.edu/research/hsd/

Wendy, a member of CityClub and not a scientist says: “I would donate blood for science. What is the parade of horribles?” i.e. what are people’s objections to doing the same? She continues, “I don’t understand what all the issues are. If data are anonymous what are people worried about?”

Sewards outlines: “We are concerned if someone’s genetic information is out there without enough safeguards. Say an employer or someone else may find data related to health test results, like a test for HIV, and that data could come back to hurt you.”

Sewards particularly notes again that right now, DNA is seen as only identifiable with related and associated information, but what about five years from now?

Edwards adds: If you are a part of a clearly identifiable community such as by your ethnicity, there is also concern about research which could stigmatize your community. An example: whether a particular ethnicity is more inclined to commit crime. Perhaps you gave your blood to fight disease and it ends up being used in unintended ways, which are not personally, but socially disagreeable to you.

Ryan Luce, co-founder of Corengi asked whether there is a public health consideration which answers the privacy concerns of individuals.

Edwards replied that some patient groups, especially want more data shared and publicly. Open data and more open access to data and research might bypass even institutions themselves. Some want the data available to anyone who might use it and make a breakthrough.

Russell noted that many of the women in GAPPS have no problem with data sharing but that GAPPS still feels the responsibility of that trust being placed in them. “We don’t want people to ever feel bad about what they did.”

Sorensen, our moderator offers one closing question: “We have an enormous opportunity to move research forward and transform medicine but must ensure the public trust. If engaging the public is the way to do it, how can the people here today get more involved?”

Edwards answers: Continue conversations like this one, join book groups, bring all of this up during dinner with friends.

Raise these issues and get people thinking about them. This is not straightforward, so we need more people thinking about it and we need more and different ideas. Jen Wroblewski and NWABR can help put book groups or other conversations together and Edwards and her colleagues at UW would love to have more public conversations — so get in touch, http://www.nwabr.org/about/contact.html and http://depts.washington.edu/bhdept/facres/kfe_bio.html.

Russell points to The Immortal Life of Henrietta Lacks by Rebecca Skloot, which tackles some of the ethical issues involved. NWABR has prepared a discussion guide which can be used personally or by anyone wanting to facilitate discussions — download it in PDF format, here.

Russell also mentions a recent article in Newsweek, “The Prematurity Puzzle – Research on early births could hold clues to disorders like autism and cerebral palsy.” Her advice is to read and engage in all of this.

Sewards concludes: contact your local representatives if you have any concerns. The rights of research subjects are codified by the federal government and we want to make sure you are aware of your rights!

Read on below for the moderated panel discussion before public questions and answers, and see a guide to all posts on this blog, here. — Brian Glanz for NWABR

Science communications in the developing world

Russell agrees and emphasizes that communication is a big factor in establishing trust, generally and not only for one population or another. People need to hear back how their contributions helped.

Our moderator, Sorensen asks Russell to discuss more about what GAPPS has been doing in the developing world with regard to communication.

Russell: “We’re focusing on populations where these problems are the most acute, with high rates of preclampsia and pre-term birth and more.” Russell recalls meeting with women living in villages in Bangladesh and India. They had seen so many babies die in their villages that they really wanted to participate in research. They understood immediately that this would help not only in their lives but that it would help women everywhere in the world. They were very enthusiastic and wanted to contribute.

Sewards repeats out loud a question they consider often: Should one population bear the burden for all? They seek a middle ground in knowing that some populations need more protection than others.

Sewards mentions the Belmont Report and says that we also need to ensure research benefits all, not any one population. See also a less technical description of the Belmont Report.

Historical abuses and public trust

Sorensen asks: “Have historical abuses discouraged too many from participating?”

Edwards answers: Public trust is huge, whether working with a historically disadvantaged or abused population or just the general question of public trust in institutions.

We don’t have health care for everyone in America. In places like Canada and England, there tends to be more enthusiasm in signing up for a population based study because people feel they benefit from the research. Public health and a more comprehensive system ensures greater protection for and benefits for participants.

That’s a problem in America both generally and especially in populations like African Americans who have suffered particularly infamous abuses like in the Tuskegee syphilis experiment. Some Native American tribes keep control of data, sharing with only the projects they are interested in.

Edwards closes by observing that there is a breakdown in communication, both with specific populations after research is completed and with the public in general. People aren’t getting the feedback they expect from scientists.