Looking Toward the Future: How Preclinical Alzheimer’s Disease Biomarker Disclosures Impact Society

Emily Largent, PhD, RN
Emily Largent, PhD, RN
Claire Erickson, PhD, MPA
Claire Erickson, PhD, MPA

The field of biomarkers is advancing quickly, allowing preclinical Alzheimer’s disease to be identified earlier and earlier in a person’s life. As individuals learn they are at risk for Alzheimer’s years or even decades before experiencing cognitive decline, what does this mean for them and for society as a whole? Drs. Emily Largent and Claire Erickson join the podcast to discuss ten key areas, such as healthcare, insurance, and direct-to-consumer testing, that should be addressed to support those at risk for cognitive decline and broader U.S. society as biomarker testing and disclosures become more prominent.

Guests: Emily Largent, PhD, RN, Emanuel and Robert Hart Assistant Professor, University of Pennsylvania Perelman School of Medicine, and Claire Erickson, PhD, MPA, postdoctoral fellow, University of Pennsylvania Perelman School of Medicine

Show Notes

Read Drs. Emily Largent and Claire Erickson’s paper, “Implications of preclinical Alzheimer's disease biomarker disclosure for US policy and society,” on PubMed Central. 

Learn more about Dr. Largent at her bio on the Penn Leonard Davis Institute of Health Economics website.

Learn more about Dr. Erickson at her bio on the Penn Leonard Davis Institute of Health Economics website.

Connect with us

Find transcripts and more at our website.

Email Dementia Matters: dementiamatters@medicine.wisc.edu

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Subscribe to the Wisconsin Alzheimer’s Disease Research Center’s e-newsletter.


Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. Today I am joined by Dr. Emily Largent, the Emanuel and Robert Hart assistant professor of medical ethics and health policy at the University of Pennsylvania Perelman School of Medicine, and Dr. Claire Erickson, a postdoctoral fellow in the department of medical ethics and health policy at the University of Pennsylvania. Dr. Erickson is also a former Badger, having received her PhD in neuroscience and her Master’s in Public Affairs from the University of Wisconsin–Madison. In August 2022, Emily and Claire published a paper in the journal Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring on the implications of disclosing preclinical Alzheimer’s biomarker results on U.S. policy. Today they are here to discuss their findings. Drs. Largent and Erickson, welcome to Dementia Matters.

Dr. Emily Largent: Thanks for having us.

Dr. Claire Erickson: Very excited to be here.

Chin: I'd like to start by providing context for our listeners. Dementia Matters has many episodes on biomarkers of Alzheimer's, specifically amyloid and tau. This publication that we'll discuss speaks to these biomarkers but in a different way, so I'd like to know what motivated you to write this perspective and why it is important to talk about the broader social implications of disclosing these biomarkers?

Erickson: Right, I think I'll take this one if that's okay with you, Emily?

Largent: Sure.

Erickson: The motivation behind writing this paper started a few years ago and I think some context about my training comes into play here. I was in the Neuroscience and Public Policy Program. I received my master's in public affairs back in 2019. From that point, it has been really important to integrate my training in policy and neuroscience together. Looking at the work we had been doing around biomarker disclosure and synthesizing what's been done in other places, it became apparent that as more people were learning their biomarker results through clinical research studies, but then looking down the pipeline of people finding this out in regular clinical environments, that we are going to be looking at some implications that have not been discussed yet in one place  It seems that there was a gap that currently existed in terms of discussing what those implications are going to look like so that was kind of the impetus, behind that.

Chin: How did the FDA approval of aducanumab, a drug designed to remove amyloid plaques in the brain, influence your decision to write the article?

Erickson: Yeah, so the decision to write this article came prior to the FDA decision on aducanumab. However, during the summer of 2021 with the decision of aducanumab from the FDA, it became ever more important for this article to be written. Looking at outlining this paper prior to that decision, we were looking at a landscape in which we presumed that there would be drug approvals coming in the near future. Certainly it was a surprise to us in 2021. However, I do think that we will be continuing to look at a landscape in which drug approvals will be happening in the space of Alzheimer's disease treatment.

Chin: And I'll say that that FDA approval of aducanumab kind of lit a fire under many research centers and researchers and clinicians who are not prepared to really think about this and address this idea of biomarkers in a clinical setting. One of the things that I experience in having these conversations is understanding who are we talking about, who are we sharing what information with. And so my next question, as we build context, is for you, Emily. Which biomarkers do you two focus on in this paper and which individuals – and by individual I mean where in the spectrum of thinking changes – are you two specifically looking at?

Largent: I'll start and just say that we're thinking about individuals who have preclinical Alzheimer's disease. They have some biomarker evidence that suggests that they are at increased risk for developing dementia or mild cognitive impairment caused by Alzheimer's disease but at this point in time they are not cognitively impaired, at least as we measure on standard tests. So biomarkers present, cognitively unimpaired. Those are the individuals we're really thinking about here. In terms of which biomarkers, I would say most of the evidence on disclosure to date has really been around the biomarker amyloid. There's been some work on tau, but I think that the problems we raise are really biomarker agnostic. It doesn't matter which biomarkers you have; it matters that you find out that you are at increased risk for developing cognitive impairment caused by Alzheimer's disease.

Chin: And thank you for saying it that way. Preclinical meaning people do not have impairments on cognitive testing, so this performance that a person has and any biomarker that they have could lead to increased risk. Okay, so knowing that, Emily or Claire, can you summarize for our listeners, what do we know so far about disclosing AD biomarkers or Alzheimer's disease biomarkers to cognitively unimpaired individuals?

Erickson: Do you want to take this one, Emily? 

Largent: I'm happy to, but I know this is absolutely your area of expertise, Claire.

Erickson: (laughs) Yes. What we understand in the literature right now about disclosing AD biomarkers to cognitively unimpaired individuals is that people generally understand what their results mean. We are providing an education session to discuss with participants what the results may be and testing that knowledge. One of the big focuses on disclosure studies so far is how is this tolerated by people? Is this safe information to return to people and are people integrating this and okay after learning this? What I mean by that is we are looking at psychological impact. After learning that they have a biomarker or not, do participants report anymore anxiety symptoms, depression symptoms, suicidality, and seeing is this safe and tolerable to participants and can they understand this information. So far what we've seen in the field is that that is the case, that cognitively healthy older adults in research studies have been able to understand their results and tolerate learning it.

Chin: That's what we know about the impact on the individual participant. What do we know about the impact on the broader group – the society, the healthcare, the legal system, the healthcare system, or the insurance system?

Largent: I think Claire set it up exactly correctly, that we have had these longstanding debates about comprehension of results and safety of disclosing results. I think that research today has really settled that, at least in these research populations, it is understandable information. It's safe information to share with people. Individuals get information even about their own brain health in the context of systems and they take that information out into the world and they make decisions, so there are systemic effects when they make these decisions. It turns out that there are, as we outline in the paper, ramifications across all of these settings – within the healthcare system, thinking about insurance, legal protections in the workplace. This information affects all aspects of an individual's life and, by extension, it affects all aspects of society.

Chin: That's really what your article gets into. I don't want to cover all of it simply because we will attach the article. We’ll link to it so that they can read it for themselves. I'm hoping we can provide an overview and some really key takeaways from it. In this article, you discussed ten key areas needing more attention, in my opinion, prior to widely disclosing this biomarker in healthy individuals. Your first two areas really speak to what I think is an important ongoing theme in the field and so perhaps, Claire, if could you share with us the two areas and why more research is needed in them?

Erickson: Yeah, so our first two areas that we focus on in this paper – and we did strategically decide what order we were going to put these categories into – the first is promoting health equity, and the second is addressing and reducing stigma and discrimination. I'll start with promoting health equity. What we mean by this is that within the field of biomedical research more broadly, but certainly within Alzheimer's disease research, specifically there's an issue of underrepresentation. Generally speaking, our research populations are largely white. They are predominantly college educated and, depending on the sample, have some kind of experience with Alzheimer's disease whether that was a parent that had Alzheimer's disease or just having exposure to an individual in the family that had some type of dementia. This is an issue when we look at the demographics of the United States as a whole, which is not reflective of these research populations that we have been using and certainly is also not reflective of the populations of individuals who are living with Alzheimer's disease, dementia as well. So when we're looking at developing both effective treatments as well as developing an understanding of the disease. It's really important that we are reflecting the people who are actually living with this disease in a representative way. We discuss some of these issues and the ways that this can be addressed. I think, from a research perspective, that looks like funding agencies, making it a priority that our research samples are representative, and then moving down the list, it really is targeting some of these systemic issues that further perpetuate issues of health equity. Now, the second topic here with reducing stigma and discrimination I think focuses a lot on what it means to grow older here in the United States. There is a lot of stigma around that. What stigma means is the negative collective attitudes that can often be held towards aging and dementia. Discrimination on the other hand happens when stigma is enacted via concrete behaviors. Looking at stigma, which is these are these negative ideas that I hold about this, and discrimination, saying, well, now we're going to exclude people based on the way that we are manifesting stigma. The way that this can be done, we think, is through a Biomarker Information Non-Discrimination Act or something to that of that nature. The reason for that is that stems from, historically – back in 2008 I believe – the Genetic Information Non-Discrimination Act was passed in light of a lot of attention being paid to genetic testing . This was after the Human Genome Project had been completed. This was at the beginning of direct-to-consumer genetic testing getting really big and with concerns that people would be discriminated against in health insurance and potentially in workplaces based on genetic information that individuals could receive, so using this as a basis for extending those protections towards biomarker information.

Chin: So you'd like to have Beena in addition to Gina?

Erickson: Yes.

Chin: Okay, all right. The next one – my next question, I should say. Emily, for you, this is going to be for numbers three, four, and five in your top ten because these all involve health care. What impacts to healthcare do we really need to consider if people start learning their AD biomarker result?

Largent: We have a cluster here where we talk about ensuring health insurance coverage, talking about controlling healthcare costs, and then preparing the healthcare workforce, right? We have to think about this in terms of do people have coverage? If they have coverage, are we making sure that it's not prohibitively expensive for the system? Then making sure that they can see people who are well qualified to care for them. Just to say a bit more about that, in terms of insurance coverage we often think of dementia as a problem experienced by older people. We know late onset Alzheimer's disease, by definition, is after people reach age 65, but when we talk about preclinical Alzheimer's disease the biomarkers are really allowing us to see evidence of Alzheimer's disease pathology years or even decades before the onset of cognitive impairment. You're looking at people learning earlier when they're not eligible for Medicare, which is an entitlement program. When they're purchasing insurance, either in a marketplace or they're getting it through employer-sponsored insurance, we start to have different considerations about whether or not they'll have access to insurance and coverage of the kind that they need to seek care in this preclinical Alzheimer's disease period, so that taking a different population and giving them information about their brain health and their biomarkers will shift the kinds of insurance mechanisms we're thinking about. In terms of healthcare costs, it turns out that millions of older adults have Alzheimer's disease biomarkers. While we hope that science helps us narrow in on those people who are most likely to benefit, say, from a drug or some other intervention, if we need to treat everybody or even a large number of these individuals with preclinical Alzheimer's disease it could be incredibly expensive. While it's not directly on this point when we think about the recent FDA accelerated approval of aducanumab, Medicare actually went ahead and increased premiums because they anticipated high costs associated with that. I think we will see these ramifications, and health care is already very expensive. There are high out-of-pocket costs. Premiums can be crippling for people. So we have to think about that balance between access to therapies and also costs. Finally, in terms of preparing the healthcare workforce, biomarkers might be familiar to us but they remain very innovative technology. As a result, a lot of clinicians haven't disclosed them in their routine practice. They haven't thought about what the implications are and, especially when we get to preclinical Alzheimer's disease, these are new lived experiences for patients. They are new skill sets for clinicians, and we need to make sure that clinicians are comfortable sharing this information with patients who might come to them.

Chin: Yeah. On a personal note, I was really struck by your points in these numbers because as someone who does disclosure in a research setting. These are not visits that can be rushed or should be rushed. They're very intimate. They're very personal. A lot of education and repetition is needed. For our listeners who have gone through this, they would say the same thing. You want to have lots of time to do this. Unfortunately in research we have structured it that way, but on the clinical side, when I'm in a memory clinic, I worry about not having enough time or having to set up another visit which is already double booked and I won't have time to actually do it and what that looks like. Then I worry about yes indeed the cost of the therapy itself, but I worry about the other ancillary costs – the extra phone calls, the extra visits to urgent care, the emergency room or the extra scans a person might have based on side effects or just based on anxiety from knowing what someone now knows. I think this is just such a huge important factor. For our listeners, this section in particular – for any clinician that's listening to this podcast – this is a really well done part of it, but it speaks volumes to what we really have to think about when we think about healthcare, the impact on healthcare care.

Largent: Yeah, I'm really struck by your point about wanting extra time to let these visits breathe. In research that I've done with individuals who talk about the experience of learning that they have a biomarker that would put them in this preclinical bucket that we've been talking about, they have told us repeatedly that this information is unlike other medical test results because, unlike other results, they feel like it has very unique implications for their identity, right? Because their brain is involved and their mind, it could be affected. It really changes their sense of self and their interpersonal relationships in ways that as one person, to paraphrase them, they said, “Well, a colonoscopy isn't going to change who I am,” but your results of an amyloid PETscan might actually change how you think about yourself.

Chin: Of course, we're disclosing one piece of information in the context of our thinking abilities. One of the things that I think I spend a lot of time on is the limitations of this information, but then I'm not disclosing if they have vascular disease or Parkinson's disease or Lewy body disease. I'm only speaking to one piece of it, which, in the context of the brain, is really quite a small piece – very impactful but small. So I think Claire is laughing because she knows my visits take a long time. As much as I try to go quickly, I really do think when it comes to healthcare this can't be a 15 minute, 30 minute, arguably even 60 minute visit. We really have to spend a lot of time to talk about it, but that also gets into my next one, which I'm really excited to ask. Emily, I'm going to ask you – and Claire if you have something to add, please do at the end – but in the big ten areas of critical need, number six is direct-to-consumer testing. Why did this make your list, and what are the potential implications of having this type of private enterprise in the Alzheimer's disease biomarker result-sharing space?

Largent: The field of Alzheimer's disease has really, for years, I think grappled with continued concern about, say, 23andMe and direct-to-consumer ApoE testing. ApoE is a susceptibility gene that says something about an individual's risk of developing dementia caused by Alzheimer's disease. They are out there. They're selling that test. I'm sure all of you have seen the ads. I enjoyed the ones around mother's day, saying you should buy the kit for your mom and they talked about mom genes. You know, we've seen this but the field has worried about issues that Claire talked about in the context of biomarkers. Do people understand this information because it's probabilistic? You know, is it safe to give people who are just clicking into a website, with no clinician mediating disclosure, this information? You just talked about this great clinical encounter, 60 or more minutes where you try to put the information in context of the limitations of what we know. I think there's still a humility around biomarker disclosure that we have to be clear about what we know it means, what we don't know that it means, what it might mean for the patient in the future, but when you click into the website we don't have that finesse – right? It's just much more you do or you don't have these genes that suggest you're at risk. 23andMe we can think about genetic context, but I would argue strongly that there is a high likelihood, like really a certainty, that we will have direct-to-consumer biomarker testing and it won't be too long. That's because we already have a regulatory framework for it. The FDA has pathways to approve these sorts of direct-to-consumer tests and we have viable business models, so not only 23andMe but there are lab companies where you can go and, without a traditional clinician visit, you can request lab tests and they'll either send someone to your home to draw the sample or give you a script to go to a nearby lab and have those samples drawn. People are going to choose to learn their biomarker information in the comfort of their own home. Some people might throw up their hands and say no way we won't let that happen but we saw people kicking and screaming to at-home pregnancy tests, to at-home HIV tests, and in the end patient autonomy won. We said, you know what, people deserve to have this information about themselves. They should be able to get it at home and I think there are positive aspects to these tests. People who are worried about stigma, which Claire really nicely discussed, can learn without needing to enter the healthcare system in traditional routes. They can get this information. They can use it to seek help if they need it, to reassure themselves otherwise. At the same time, Nate, posing the question. You mentioned these are not healthcare actors, right? These are private companies that are set up for profit. So at the same side I think that this has a lot of benefits, we have to think about the fact that we now have very sensitive health information in the hands of people who are not constrained by traditional health privacy laws. This made the list because I feel very strongly that it's coming and if we aren't thinking about what it should look like and how to protect people we are missing out. The window of opportunity is going to close before we've had a chance to do something proactive to help people.

Erickson: Yeah, the only thing I'd add to that is understanding of risk information is a huge challenge. It's something that is challenging in a healthcare space. It's challenging in a clinical research space, and in a direct-to-consumer marketplace it is also a critical issue. There have been a number of interesting articles of individuals who learned results through a direct-to-consumer genetic test and were very concerned and didn't know what to do with this information. As Emily pointed out, I also agree that this is a certainty and something that we're going to be looking at in the near future, that people could have access to this. How are people learning about their risk and then what are they doing with that information? Are they then entering the healthcare system and talking about this with somebody? Are they making plans that are informed by a grounded understanding of risk? As human beings, we're just notoriously very bad at understanding risk information. As of right now, what we understand about Alzheimer's disease biomarkers, they are not a guarantee of developing dementia. Perhaps we will get better estimates in terms of, you know, what percent increase risk are you, depending on what age you are and what biomarkers you have. For sure, I think we're moving in that direction, but they're not a guarantee. So how do people react to learning information that still has uncertainty attached to it?

Chin: Now the last four in the big ten can be broken down into couplets – or at least that's what I've done. The first of these couplets is about planning for the future and the second is about helping people experience cognitive change. Emily, can you speak to the first grouping, and then Claire speak to the last one?

Largent: Sure. Ideally when we talk about biomarker information, we have the old adage that knowledge is power. This is, I think, very empowering information. People have told us it's empowering when they get it and we ask them what the experience was like because they can use it to plan for the future. Part of thinking through the implications is what does it look like to plan for the future when you learn that you have biomarkers that put you at increased risk. We talk a bit about paying for long-term care. There's good evidence at this point that people who are at increased risk are interested in purchasing long-term care. A challenge here, of course, is that we get what we talk about as adverse selection, so people who have knowledge that they're at increased risk will preferentially buy into the risk pool. That means that the overall risk goes up, premiums go up because more people end up utilizing that long-term care, and that can price people out. Long-term care has long been a challenge for U.S. policymakers, but this, I think, is a particular impetus to really think about long-term care planning and how we're going to pay for it as individuals but also as a country. I mean, again, we're calling for these as social solutions because I think it's a social problem and we need to come up with good policy solutions. We also know that some people at least think about planning ahead for the end of life once they get this kind of information, and that can look like different things. You know, some people express to us that they're worried about becoming a burden on their family if they experience cognitive impairment. They talk about not wanting to live that way. I think some of that gets back to the stigma. We need positive narratives about what it means to live well with dementia, but recognizing that some people do want to think about the end of life as part of their planning. There are a number of open legal questions that we're going to have to settle, so those would include things like, is medical aid in dying something that should be available to individuals who have cognitive impairment? Right now, they are often not eligible for aid in dying laws because they can't satisfy the two requirements that you have to meet simultaneously, which is having decision-making capacity to request aid in dying but also having a diagnosis that suggests you have six months or less to live. There have been some people who have pushed to expand these laws to encompass people with neurodegenerative diseases, but that has not happened yet in the U.S. and we have to think about it. Depending on when people would want to die – if they wanted to say have. medical aid in dying by advance directive – that would really force us as a country to grapple with issues like euthanasia. Huge ethical, social policy issues we need to think about there. There are also people interested in advanced directives for dementia or voluntary stopping of eating and drinking by advanced directive. These are all legal tools that remain underdeveloped and, I think, underexplored and untested by courts. Huge areas to think about around the end of life, but we're going to have a large group of people, once we have biomarker disclosure, who I think will really be advocates and push us to confront these issues that we need to adopt. The third issue I'll cover in terms of advanced planning is really thinking about tools for decision-making when people have waning capacity. For a long time when we think about a syndromal definition of Alzheimer's disease, people learned that they had dementia at the same time that they learned they had probable Alzheimer's disease, but when we talk about preclinical Alzheimer's disease we're pulling way back and we're seeing, again, this is years or decades before the onset of cognitive impairment. We need to think about how to help people really, I think, traverse the trajectory of cognitive decline and that means how do I make decisions about my life. Those can be mundane decisions; do I want chicken or fish for dinner? They can be really momentous decisions; is it time to give up my car keys? Do I need to move into an advanced care facility at some point? Am I interested in aid in dying at some point in my life? I would suggest that advanced directives really don't do what we need them to do; they anticipate a brief period right before death where the person's completely lost decision-making capacity, but when you think about somebody with preclinical Alzheimer's disease, years or decades of decisions might be made while they move from cognitively unimpaired to MCI to a dementia-level of impairment. I'm particularly interested in a tool called supported decision-making, which is recognized in about 20 right now and is being considered an even more, where people can actually say, “I need help making decisions. I would like help making decisions.” They identify somebody in their life who supports their decision-making but the decisions remain authentically their own so that other person is there to help them but the decisions are still theirs. There's huge interest in the legal community in trying to figure out how to use this tool for older adults, but it hasn't fully been tested yet to see how it works, how we can use it in neurodegenerative disease. So that's another exciting area where I think progress in the law will marry very nicely with this revolutionary understanding of Alzheimer's disease that's really been reflected in the biomarker revolution.

Chin: Claire, you want to address the last one?

Erickson: Yeah, so the last area that this paper discusses is supporting people with dementia and with cognitive decline. I think that it is really powerful to end this paper with this section. The reason for that is this paper is focused on returning biomarker results to individuals who are in the preclinical phase of disease and, as Emily discussed, that means people without cognitive changes that are measured by these cognitive tests that we have but do have biomarkers of Alzheimer's disease. It's important to not forget that whatever we do and the impacts that we are having in targeting preclinical disease, there are still going to be people who are living with dementia whether that is just because we are not able to prevent 100 percent of Alzheimer's disease, dementia cases or – and really I think and – is that there are other causes of dementia that are not being discussed in this paper. Because of that, we cannot look at solutions that exclude targeting issues that are related to care and quality of life for individuals that are living with dementia. This last section is really focused on that. I think it goes back to the stigma that exists around aging in the United States and then within the stigma around aging, the stigma of living with dementia as well and what it means to age well in the United States and age well with dementia in the United States. For caregivers of people with dementia, it's often a very isolating experience. Not only is the person living with dementia excluded from the community and isolated, their caregivers oftentimes excluded and isolated as well. In approaching supporting improved quality of life that looks like integrating these individuals into our communities and providing sufficient resources to care for these people. This looks like providing respite care. This looks like having adequate and not absorbently costly care facilities for people living with dementia and kind of holistically looking at how individuals with dementia and their loved ones that are caring for them can be reintegrated into society and into our communities throughout the disease trajectory.

Chin: I'm going to use my own big ten here. On a scale from one to ten with one being not prepared at all and ten being ready to disclose, how would you rate societies – I guess U.S. society's readiness for preclinical Alzheimer's disease biomarker disclosure, and why that number? Emily, let's start with you.

Largent: Okay, I'm going to give us a two. I'm going to say it's a two because we have very thoughtful clinicians and researchers who have thought a lot about disclosing to individuals. I still think we need to know more about that disclosure process, but we have a good evidence basis for the individual. Just as our nation has really not succeeded in providing good care to people who are living with dementia, I think we stand unready to provide a good example of what it means to live well with preclinical Alzheimer's disease. I guess this tells you something about my students and what they experience. I guess maybe I'm a harsh grader, but I'm going to give us a two out of ten. Not great.

Erickson: I feel like a copycat because my number is also a two because I was going through these questions in advance and I was talking to my friends last night just about this. I said, “I think it's a two.” They're like, “Really? That low?” I was like, “Yeah, that low.” Exactly to Emily's point, we have not done a whole lot around dementia care from a policy perspective. We've had decades of seeing this as a growing problem and seeing this as really a total issue in terms of not only is it an economic crisis, but it is a personal crisis too. It's an individual and personal crisis that is existing. I think through my public affairs training and coursework there, what really stuck out to me was the long trail that is often pursued in passing legislation and making policy to address things. So when you look at something like the Genetic Information Non-Discrimination Act, it's like, wow, this makes sense that this was passed around 2008 with the advent of direct-to-consumer testing, with all of this incredible interest and discussion around the human genome. However, when you look at the history of the Genetic Information Non-Discrimination Act, original bills that were proposed actually started in the 1970s and so it took thirty-ish years to go from people who were originally advocating for protection of genetic information to it actually getting passed. That's why we need to start this conversation right now because we are not at the point yet of doing this in a non-research setting widely and because of that we need to be having these conversations to start the ball rolling on pushing forward protections like we outlined in this paper. However this paper is also non-exhaustive, right? We're working with word limits, and we were highlighting major issues but there are lots of different things I think that can be discussed and promoted that can help support individuals who learn preclinical biomarker information. That's going to require people from all different backgrounds, people with all different types of training, to approach this in a way that creates a network or a safety net of policy.

Chin: All right. Well then, to end, what do you want our audience, which consists of people from the public, scientists, policymakers, funders, to take away from your article? And which areas are you currently working on in your own research?

Largent: Claire's right. Policy tends to really lag. You need these windows to open when people agree on problems; they've already had some time to ruminate on solutions, and then there's political will. While I completely agree with that characterization of the process and my ‘two’ suggests that I share some pessimism about our ability to come and seize the moment, I would say that really, there's no time like the present and that's because disclosure of preclinical Alzheimer's disease is only happening in research settings right now. You will not go to your doctor and find this out in a regular care setting. So we have this very unique opportunity where we can get ahead of clinical practice and start putting these protections into place for people so that we're not trying to backsolve and address problems that already exist but we're getting ahead of problems. Now that might be more than we can hope for at this particular political moment but for anybody who's listening and has the power to change things, thinking about these issues now will really save individuals a lot of grief but will also help set us up as a society to really help care for people who can be quite vulnerable and merit our attention and policy-making thought.

Erickson: I am really excited about this field. Knowing what I know about the policy-making process, I am still optimistic because there are so many avenues that we can start this on. All of those avenues are going to lead to improved care for people across the Alzheimer's and dementia spectrums. That being said, I think Alzheimer's disease and long-term care and aging, more broadly, is something that there is political will behind. We are existing in a time and space with regards to Alzheimer's disease research and Alzheimer's support that I don't think has existed yet, to capitalize on that and keep the momentum going while there's political will to begin doing some of these things. That being said, I want to highlight that all of the areas that we discuss in this paper have ramifications for other diseases and other areas that do not pertain to just aging or Alzheimer's disease specifically. That's really important too, is thinking collectively about the ripple effects that our policy-making decisions can have in, you know, negative, obviously, but also positive ways as well, and what is the way that we can get a foot in the door. Right now, I think Alzheimer's disease is a huge foot in the door where there is this collective action behind it and political will to address it.

Chin: Well, I appreciate those answers. I was worried you two were going to take us down a negative ending to this podcast with your scores of ‘two,’ but we have light at the end of the tunnel and there is still hope that we have time, although the window is closing. And so with that I'd like to thank you for being on Dementia Matters and I certainly hope to have you both on in the future like.

Largent: Thanks so much.

Erickson: Thank you.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you listen or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin--Madison. It receives funding from private, university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Amy Lambright Murphy and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu, and follow us on Facebook and Twitter. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.