How Will Genetic Research Be Utilized in Public Health Programs? Background Beliefs about Strengths and Weaknesses of Genetics versus PublicHealth
A strong theme found in our sample was the belief that policy intervention was more important than genetics in lowering smoking rates and incidence of smoking-related disease. These individuals (about half of health payers, pharmaceutical employees and prevention specialists, but only a third of clinicians and a few scientists) mentioned several strategies that they believed were effective: large-scale public programs that worked to denormalize tobacco use, increased taxes, community interventions, smoke-free workplaces, banning the legal sale of cigarettes, implementation of and coverage for cessation programs, and media campaigns. One health payer verbalized this sentiment:
What is going to be far more effective is to change the social norms around this behavior. And, these kinds of genetic tests, the possibilities that we've talked about are … a minor blip in my opinion. It's a social problem. (Health payer: director of research and evaluation at a large health care company in the Midwest)
In contrast, only 2 stakeholders in our sample, both health payers, dismissed policy interventions, believing that they were either ineffective or overly punitive:
We use excessive taxes on cigarettes as a deterrent to smoking. I'm not aware that that has been a deterrent to smoking. That's number one. And I think people would say that if there's a genetic basis, it's a punitive tax on a medical illness. So, where else do we see punitive taxes? Do we have a punitive tax on a candy bar? (Health payer: senior medical director at a large, national health care company)
Others may question the veracity of this assessment, which was voiced by only 2 informants. There were, however, more varied critiques of traditional public health policy, most often offered by clinicians. While clinicians embraced the importance of many social policies, they also saw weaknesses in public health programs’ effectiveness in fighting the tobacco companies, getting the right services to individuals and raising money to enact meaningful policies, cessation programs or research.
Well, I think there's a whole set of public policies that have been shown to be effective in preventing the initiation of tobacco use and … encouraging people to quit. [We need to be] embedding and making aggressively available to people the evidence-based treatments that we know work to help support them quitting, that are being adopted, at best, at a glacial pace in the country and compared to the nimbleness of which the tobacco industry is able to alter its tactics and strategies to get people to use tobacco … One of our core difficulties that we struggle with is that … there's been very little in the way of identifying successful ways to triage people to different forms of service. We struggle all the time, partly because of the lack of sufficient resources in this field, which is actually the core problem. (Clinician in the Pacific Northwest)
This statement also shows that even those stakeholders who believed public health was more important did not necessarily discount genetic alternatives; if public health relies on population-targeted programs, and genetics creates individualized treatment (i.e. pharmacogenomics), perhaps they can complement each other to create effective tobacco control programs. In fact, almost a fourth of our sample, spread relatively evenly across the various stakeholders, refused to choose either tobacco policy or genetic research as ‘more important’, instead believing that they complemented each other:
I wouldn't, a priori, say there's any basis for saying, ‘A genetic approach is any more or less effective than any of these other activities in isolation.’ … I can certainly envision ways in which a genetic story [could be] woven into the overall mix … Smoke-free places and tax increases, and some of the other effective policy measures will have been well-used by then, and kind of work into [the] wallpaper. So you need a new message. And [genetics] could be the new message. And it could be used in the media campaign. They're not mutually exclusive. (Pharmaceutical employee working in marketing)
This respondent, like many in our sample, embraced both tactics and believed that genetics potentially could be woven into the existing public health framework.
Will Genetics Influence Policy?
Embracing public health programs does not presume a rejection of genetic research. However, embracing ‘potential’ is different from enacting change. Stakeholders we interviewed often struggled with defining concrete ways public health and genetics fit together.
… unless there's something we can do with [genetic] information, I really don't see it influencing public health at all. If we were able to use it in a way that made sense, then okay. But, until that happens, I don't see how it could influence us. (Prevention specialist working in a tobacco control program at a state public health department, Pacific Northwest)
A fourth of our sample – primarily scientists, prevention specialists and clinicians – did not think that genetic research would influence public policy, either because of the counter-effect of the tobacco industry or the belief that politically data would be ‘spun’ to support existing and varied political viewpoints on tobacco policy. In other words, informants believed that people have already made up their mind about tobacco policy, that the government either does or does not take tobacco control seriously and additional data will not change those policies or beliefs:
I'm very mindful of the politics involved here. The tobacco industry exerts tremendous influence on politicians, and it's a big business, and I try not to be too cynical about the political aspects of this, but we can have the best evidence in the world and if there's a lot more dollars that the tobacco industry throws at political action committees and legislators and lobbyists and so forth, we may have very little influence, ultimately. (Scientist: professor of medicine and clinical research at a large Midwestern university)
Interviewer: And do you think that genetic explanations of nicotine addiction or tobacco-related diseases would influence how the government sees its responsibility for preventing smoking-related disease?
Respondent: Hm … not in [our state].
I: Why not?
R: For the most part, frankly, it's just not a priority. (Prevention specialist: tobacco cessation specialist at a public health department in the Midwest)
Stakeholders generally believed that genetic knowledge would not influence prevention efforts. Most stakeholders felt that genetic knowledge would not be as pertinent to individuals’ choices as peer or other environmental influences:
[Genetic information] won't make a difference. [People are] going to do whatever they want to do. There are some proportions of people, and we don't know how many, who will actually be made more motivated not to smoke by that information. And there are some people who may in fact adopt a fatalistic approach – ‘Oh, well, I've got the gene. Nothing I do matters.’ (Scientist: head of a genetics lab in a large, southern university)
Teenagers are not able to make informed decisions about anything that has long-term consequences. We know that. So why give them the information when there's very little chance that it's actually going to help their behavior in a positive way? That there's a chance that it could well alter it in a negative way. (Prevention specialist: director of a Midwestern state's tobacco control program)
However, a third of our sample embraced genetic research, and the subsequent potential for increased medicalization of addiction, as a positive influence that will strengthen policies, encourage health care companies to cover cessation programs and promote better funding of tobacco control programs.
So, public policy could benefit from the genetic findings in the sense that it may help to influence policy-makers’ beliefs that this is a true addiction and not just a bad habit. I think that giving nicotine addiction the kind of credibility as a true medical condition would go a long way and legitimize it in the minds of legislators and policy-makers who can give the kind of money to make a difference. (Scientist: professor of medicine and clinical research at a large Midwestern university)
It is interesting to note that clinicians were more likely, and prevention specialists less likely than other stakeholders, to embrace genomics as part of a process of medicalization of addiction, where addiction is reduced to a biologically-based problem or disease, a point to which we return below.
Only a small number of stakeholders were hopeful that targeted treatments would effectively change public health policies, generally by creating more individualized information:
… The way I always think about genetics and, I guess, policy-related issues, is that it will help individualize therapies, interventions, and presumably, that will improve things because … it's not this ‘one size fits all’ mentality, and I think that turns a lot of people off … And, in terms of prevention, I think [individualization is] a very important area because it's hard for people to make changes for things that haven't happened, or that might happen. And [it's hard for people] to really understand what risk is. And, so I think that the more we can do to try and personalize that information, individualize it, I think the more effective we're going to be in our preventive strategies. (Health payer: worked with a large health care company in California to develop guidelines for genetic testing)
Providing individualized information has long been a part of public health programs, especially those that engage in population screening for genetic diseases (e.g. newborn screening). But questions remain about the cost associated with screening programs for non-mendelian conditions, the speed with which genetic interventions will enter the field and whether an increasing focus on genetic interventions will detract from the overall effectiveness of traditional public health programs. These questions seem especially important for genetic information that is predictive, as opposed to the traditional screening for genetic disorders that are highly penetrant and actionable, which have integrated into public health programs with greater ease.
Will a Genetic Understanding of Addiction Undermine Existing Policy?
Prevention specialists often mentioned fears of losing funding for existing programs due to the appeal of genomic approaches. A minority (10%) of stakeholders worried that spending for genetics may undermine public health funding. No scientists expressed this sentiment.
Because, the way I look at it in terms of research, people like to do research, bench research. People like to figure out, you know, the ins and outs of nicotine addiction, for instance, to the nth degree. People do not like to do applied research, which is taking a look at this population, and what would work best in terms of approaching this population for a successful tobacco use prevention. And so, it's easy for people to decide that they want to do research around this area and to take away funding from prevention efforts. (Prevention specialist: program manager of a state-wide media campaign in the West)
It is not surprising that scientists did not express this sentiment; even though they recognized the importance of public health programs, they did not see their own work as detracting from tobacco control programs.
Other stakeholders believed that a genetic understanding of nicotine addiction would shift responsibility away from tobacco companies and governments, onto individuals:
I think [a genetic explanation of nicotine addiction] could cause the government to kind of shirk responsibility, or shift – I shouldn't say shirk – maybe shift responsibility away from the large tobacco companies and onto the individual. (Prevention specialist leading outreach efforts to underserved and vulnerable populations at a nonprofit tobacco control organization)
That genetics may undermine public policy is a small but consistent theme among those in public health.
What Evidence Do We Need, and Will Genetics Be Cost-Effective?
Among prevention specialists and clinicians in our sample, solid evidence, along with cost-effectiveness, were the factors most often noted as critical to the integration of genetic research into public health programs. Two prevention specialists mentioned the disconnect between bench research and clinical practice and noted that there was much work to do to bridge that gap:
There is some [research] going on, but you're talking [about] more or less taking it from the bench to population-based, and that's a lot of trials in between here and there. So, we have to understand what the mechanisms are. Do we have to define causality? We have to, in terms of what the pathways are. Then, if you're talking about medication, [we have to know], is this effective and safe and all that kind of stuff, too. So, we have a lot of work to do between here and there. (Prevention specialist: oversees tobacco control program for a large city in the Northeast)
This informant asks what qualifies as appropriate evidence: must we define causality; must we know specific pathways? While overt questioning of the nature of evidence is rare in our sample, this interviewee's challenge indicates that scientists and prevention specialists may have a different vision of what qualifies as appropriate and convincing evidence [62
As noted above, discussing evidence and cost-effectiveness often go hand in hand. Some stakeholders doubted whether a genetic approach would ever be as cost effective as current approaches:
If … you could get a test … and prevent that heart/lung transplant or something. I mean, that would be different. But we're talking about one hundred dollars of NRT [nicotine replacement therapy] and a few hundred dollars of counseling … How can we make a targeted intervention that requires an expensive test work better than creating smoke-free environments and getting people patches? … I don't think we can. (Prevention specialist: working in a state public health department in the Pacific Northwest)
Two clinicians called into question whether a genetic research agenda to assess risk made sense from a public health standpoint:
The equivalent would be, in occupational medicine, going into a factory where workers were stirring big open vats of benzene and doing genetic studies to determine who's more or less susceptible to benzene so we could figure out who it's okay to allow to be exposed or not be exposed. (Clinician in the Pacific Northwest)
I mean, what would you do if you did identify [people with higher susceptibility]? So at this point, I wouldn't know what I could do to prevent them from smoking, other than to do what I do anyway, which is to try to give prevention messages, try to do the public health aspect of things, try to, in clinical preventative visits, talk about it, try to provide information and try to steer people away from that and show them the risks of it. (Clinician, who is also involved in prevention efforts on the East Coast)
Two other clinicians simply emphasized the importance of evidence when adopting genetic technologies into the realm of public health:
What would it take? It would take strong science with good evidence that genetics would make a difference in treatment outcomes. And it's going to take someone paying for it. And ultimately, that's what it comes down to is getting somebody willing to pay for it. But I think if you can – if you have the first two things, you can get the third. (A second clinician working in the Pacific Northwest)
At the heart of these statements are basic epistemological debates about the nature of evidence and what counts as ‘productive’ knowledge. Such differences illustrate an important challenge to those seeking to integrate genetics into tobacco control.