November 22, 2016
On November 18, 2016 ASU’s Sandra Day O’Connor College of Law, along with the Center for Law, Science & Innovation (LSI) and The Lincoln Center for Applied Ethics, hosted The Aging Brain Workshop. Leading scholars, attorneys, medical researchers, neuropsychologists, physicians, ethicists and policy advocates from around the nation gathered to discuss the causes and implications of aging on the brain. The workshop focused on ethical, legal and policy implications of new scientific findings related to the aging brain, ranging from medical conditions such as dementia and its subsets to addressing brain health, and examining end-of-life concerns from guardianship to death.
The Mayo Clinic’s Richard Caselli discussed dementia’s blurry, complex landscape where disease, in this case, Alzheimer’s (AD), does not express overnight, symptoms may not be readily apparent in life, and where biomarkers are in play along with several genetic triggers. AD is associated with deterministic factors stemming from dominant autosomal inheritance (APP, PSEN1, PSEN2) — key in the development of early-onset familial AD — and other genetic risk factors, particularly APOE4 in later-onset. Individuals with one copy of the APOE4 genetic mutation may, however, never get the disease, while others who develop AD do not carry the APOE4 gene variant. Among other things, Caselli asked the group to consider whether people should be tested for AD risks and predispositions (for a myriad of reasons) and whether AD is a disease or part of normal aging.
For Banner Health’s Eric Reiman, AD is an “unacceptable problem” for both those affected and their caregivers. As a matter of global urgency, prevention is key according to Reiman. Prevention, the earlier the better, potentially consists of diet, exercise, vaccine therapies and anti-amyloid medication (amyloid-build-up in the brain is AD’s partner in crime). Pre-clinical biomarkers will be central to successfully researching and implementing preventive strategies for AD.
Weill Cornell Medical College’s Joseph Fins examined different brain states and their dynamic nature. Individuals may reemerge from some brain states, such as acquired TBI, and others may not be reversible. What are the implications for capacity and competency determinations for reemerging decision-making? Focusing on the minimally conscious state (MCS), for example, there is evidence of a conscious existence, a condition that patients may reach as a result of brain impairment (regressively) or eventually enter into (progressively) from a vegetative state, often unnoticed by others. Fins expressed that the community has a “moral obligation” to care for the MCS population such as establishing effective legal structures. He discussed medical interventions such as electrode implants and volitional neuro-imaging and the related concept of re-emergent capacity — where interventions have a positive impact on a patient or a patient otherwise improves and no longer requires guardianship with full restrictions.
Stanford Law School’s Henry “Hank” Greely explained disease prediction via genetics, biomarker and specific diagnostic tests and the ethical and legal implications of prediction. Primarily, these were described by Greely as family impacts, employment discrimination, insurance access and privacy protections, and, from an insurer’s perspective, the problem of adverse selection.
LSI Faculty Fellow, Betsy Grey, discussed public policy’s influence on the concept of capacity, noting three particular movements in that area: autonomy and informed consent; desegregation of the mentally disabled corresponding with community integration; and the disability rights movement. All of these movements led to individualized, needs-based assessment of capacity. Grey then moved on to explore the potential impact that pre-clinical biomarkers will have on capacity assessment and guardianship decisions, including improving the accuracy of capacity assessment, as well as potential problems with biases and privacy concerns.
The Mayo Clinic’s Cynthia Stonnington focused her discussion on keeping the brain active with a healthy lifestyle and exercise, noting that some habits, like a low-hypertension diet or the Mediterranean diet appear to have a positive effect on healthy brain aging. The role of such factors in preventing or delaying diseases such as AD have yet to be definitely confirmed scientifically, although there is some suggestive evidence there may be a benefit.
LSI Faculty Director Gary Marchant reviewed recent research into the causes of aging and aging interventions. There are indications that senescent cells, which accumulate in aging tissues and organs accelerate the aging process and are to blame, at least in part, for human aging, either because they have stopped dividing or not destroyed themselves. Drugs called senolytics destroy these damaging cells but their availability on the market is fraught with regulatory roadblocks. Other drugs, like metformin and rapamycin, approved for particular endpoints have also demonstrated effectiveness in combating aging and age-related diseases. However, they face similar regulatory roadblocks in large part because aging is not recognized as a disease by the FDA and because of the FDA’s outdated “one disease endpoint at a time” drug approval model. Given the expense of drug R&D, manufacturers are unlikely to invest in a product that cannot be marketed as preventing a multitude of age-related diseases and generally will not be covered by insurance for non-approved indications.
Pennsylvania State University, Dickinson Law’s Katherine Pearson weighed in with guardianship concerns respecting the elderly. She highlighted the need to take proactive steps when working with cognitively impaired individuals. For example, she suggested using limited guardianships where warranted and creating shifting presumptions — placing the evidentiary burden on a caregiver that actions taken, giving rise to a legal dispute, were not inappropriate in the circumstances — as opposed to a plaintiff having the burden to show otherwise.
End of Life Liberty Project’s Kathryn “KT” Tucker advocates for choice at the end of life — not for more life-promoting interventions when an individual wishes otherwise. End of life procedures are often referred to as physician-assisted suicide or death with dignity. Tucker prefers the term “aid in dying” as a middle ground. She argues for choice and fewer statutory limitations on aid in dying and predicts choices and availability will expand in this area. Legal statutes permitting the practice typically provide immunity from liability to physicians, lessening the threat of survivor-initiated lawsuits. At the workshop, Tucker discussed the importance of having legally recognized directives in place to put individual wishes into effect before cognition is impaired and capacity is called into question. Tucker concluded her presentation with a poignant observation that “preservation of true self” is not the same as “suicide.”
Interestingly, only a couple of days after the workshop, results of a study were published showing “the percent of older US adults with dementia, including Alzheimer’s disease, declined from 11.6 percent in 2000 to 8.8 percent in 2012, a decrease of nearly a quarter.” This is positive news because, among other things, “[t]hese new numbers not only portend a lesser burden on the health care system (and families) but also suggest that something has changed over the generations — and identifying that change could drive down dementia rates even further.” Details of that study are available here.
A corresponding Aging Brain Conference, for the general public, is planned for Fall 2017. More on age delay here.