Controlling futures? Online Genetic Testing and Neurodegenerative Disease

Online personalized genetic testing services offer accessible and convenient options for satisfying personal curiosity about health and obtaining answers about one’s genetic provenance. They are especially attractive to healthy people who wish to learn about their future risk of disease, as Paul Mason’s (2017) case study of “Jordan” illustrates. In this response, we consider how online genetic testing services are used by people diagnosed with a common neurodegenerative disease, Parkinson’s disease, to gain a sense of certainty regarding the future.     

Physical activity and healthy weight maintenance from childhood to adulthood

The objective of this study was to determine whether change in physical activity was associated with maintaining a healthy weight from childhood to adulthood. This prospective cohort study examined 1,594 young Australian adults (48.9% female) aged 27-36 years who were first examined at age 9-15 years as part of a national health and fitness survey. BMI was calculated from measured height and weight, and physical activity was self-reported at both time points; pedometers were also used at follow-up. Change in physical activity was characterized by calculating the difference between baseline and follow-up z-scores. Change scores were categorized as decreasing (large, moderate), stable, or increasing (large, moderate). Healthy weight was defined in childhood as a BMI less than international overweight cutoff points, and in adulthood as BMI<25 kg/m(2). Healthy weight maintainers were healthy weight at both time points. Compared with those who demonstrated large relative decreases in physical activity, females in all other groups were 25-37% more likely to be healthy weight maintainers, although associations differed according to the physical activity measure used at follow-up and few reached statistical significance. Although younger males whose relative physical activity moderately or largely increased were 27-34% more likely to be healthy weight maintainers than those whose relative physical activity largely decreased, differences were not statistically significant. In conclusion, relatively increasing and stable physical activity from childhood to adulthood was only weakly associated with healthy weight maintenance. Examining personal, social, and environmental factors associated with healthy weight maintenance will be an important next step in understanding why some groups avoid becoming overweight.     

TAX-SUPPORTED MEDICAL CARE FOR CALIFORNIA'S CHILDREN—Where Should It Be Going?

The multiplication of separate governmental agencies providing health services to California''s children, the increasing difficulties in staffing tax-supported health agencies and the recent studies of the quality of care under these programs, have all pointed to an urgent need for prompt decisions on certain basic questions about the function of tax-supported medical care for children of dependent families.Fourteen separate kinds of health services are currently provided through public funds at an annual cost to California taxpayers of $52,000,000. These funds underwrite an uncoordinated, fragmented, patchwork quilt of medical care for some 500,000 children. Coordination and integration of these services through “one door” with uniform eligibility requirements and maximum utilization of private physicians'' services that meet appropriate standards is needed now. California physicians have an urgent responsibility to provide leadership in the development of more effective and more economical organization and distribution of higher quality medical care services for California''s children dependent on public support.     

Values at stake: autonomy, responsibility, and trustworthiness in relation to genetic testing and personalized nutrition advice

Personalized nutrition has the potential to enhance individual health control. It could be seen as a means to strengthen people’s autonomy as they learn more about their personal health risks, and receive dietary advice accordingly. We examine in what sense personalized nutrition strengthens or weakens individual autonomy. The impact of personalized nutrition on autonomy is analyzed in relation to responsibility and trustworthiness. On a societal level, individualization of health promotion may be accompanied by the attribution of extended individual responsibility for one’s health. This constitutes a dilemma of individualization, caused by a conflict between the right to individual freedom and societal interests. The extent to which personalized nutrition strengthens autonomy is consequently influenced by how responsibility for health is allocated to individuals. Ethically adequate allocation of responsibility should focus on prospective responsibility and be differentiated with regard to individual differences concerning the capacity of adults to take responsibility. The impact of personalized nutrition on autonomy also depends on its methodological design. Owing to the complexity of information received, personalized nutrition through genetic testing (PNTGT) is open to misinterpretation and may not facilitate informed choices and autonomy. As new technologies, personalized nutrition and PNTGT are subject to issues of trust. To strengthen autonomy, trust should be approached in terms of trustworthiness. Trustworthiness implies that an organization that develops or introduces personalized nutrition can show that it is competent to deal with both the technical and moral dimensions at stake and that its decisions are motivated by the interests and expectations of the truster.     

A prospectus for ethical analysis of ageing individuals' responsibility to prevent cognitive decline

As the world's population ages, governments and non‐governmental organizations in developed countries are promoting healthy cognitive ageing to reduce the rate of age‐related cognitive decline and sustain economic productivity in an ageing workforce. Recommendations from the Productivity Commission (Australia), Dementia Australia, Government Office for Science (UK), Presidential Commission for the Study of Bioethical Issues (USA), Institute of Medicine (USA), among others, are encouraging older adults to engage in mental, physical, and social activities. These lifestyle recommendations for healthy cognitive ageing are timely and well supported by scientific evidence but they make implicit normative judgments about the responsibility of ageing individuals to prevent cognitive decline. Ethical tensions arise when this individual responsibility collides with social and personal realities of ageing populations. First, we contextualize the priority given to healthy cognitive ageing within the current brain‐based medical and social discourses. Second, we explore the individual responsibility by examining the economic considerations, medical evidence and individual interests that relate to the priority given to healthy cognitive ageing. Third, we identify three key ethical challenges for policymakers seeking to implement lifestyle recommendations as an effective population‐level approach to healthy cognitive ageing. The result is a prospectus for future in‐depth analysis of ethical tensions that arise from current policy discussions of healthy cognitive ageing.     

Making the health care system 'safe' for persons with HIV infection or AIDS.

If health care reform is implemented in states and nationally, the safety of this process needs to be examined for persons with human immunodeficiency virus (HIV) infection or the acquired immunodeficiency syndrome (AIDS). Reform should assure ongoing prevention and transmission control of HIV and continuous coverage of medical costs for persons ill with HIV or AIDS. These persons currently benefit from various state and federal categoric programs designed to assure access to preventive and personal care services. Washington State has passed health care reform legislation that envisions integrating these programs to provide a system of population-based and personal health care. This legislation was analyzed using existing epidemiologic and entitlement information about persons with HIV infection or AIDS in the state to assess its effect. The relationship between public health and personal care services will be a central concern for those with HIV infection or AIDS, and complete coverage of this group may be achieved relatively late in the process of implementing health care reform. Health personnel planning under health care reform will affect the delivery of HIV- and AIDS-related services. Including treatment of AIDS in the basic benefit package merits particular attention. These issues parallel those being faced by the nation as a whole as it seeks to ensure epidemic disease control and compassionate care for long-term disabling illness if health care reform is implemented.     

The “Long-arm” of chronic conditions in childhood: Evidence from Canada using linked survey-administrative data

The objective of this study was to investigate the relationship between health conditions in childhood (ages 4–11), and health and socioeconomic outcomes in adulthood (ages 21–33). This study takes advantage of a new linkage between the National Longitudinal Survey of Children and Youth (NLSCY) and administrative tax data from the T1 Family File (T1FF) from Statistics Canada. The NLSCY includes rich longitudinal information on child development, while the T1FF includes administrative tax information on each child in adulthood (e.g., income, social assistance). The primary measures of child health relate to the diagnosis of a chronic condition, affecting the child’s physical or mental/developmental health. The results suggest that mental/developmental health conditions in childhood more negatively influence adult health and socioeconomic conditions, compared to physical health conditions. Interaction models reveal modest heterogenous effects; for example, there is some evidence of a cushioning effect from higher household income in childhood, as well as an exacerbating negative effect from lower birth weight for mental/developmental health conditions. Using a covariate decomposition approach to explore underlying pathways, the results reveal that associations between health in early life and outcomes in adulthood are partially explained by differences in cognitive skills (i.e., mathematics test scores) in adolescence (ages 16–17). Results may encourage policy investments to mitigate the occurrence of health conditions in childhood and to ensure timely access to educational supports and health services for children with chronic conditions.     

Does the community want devolved authority? Results of deliberative polling in Ontario.

OBJECTIVE: To obtain and contrast the informed opinions of people in five decision-making groups that could have a role in devolved governance of health care and social services. DESIGN: Deliberative polling. SETTING: Three rural and three urban communities selected from the 32 areas covered by a district health council in Ontario. PARTICIPANTS: A total of 280 citizens from five potential decision-making groups: randomly selected citizens, attendees at town-hall meetings, appointees to district health councils, elected officials and experts in health care and social services. INTERVENTION: Participants'' opinions were polled during 29 structured 2-hour meetings. MAIN OUTCOME MEASURES: Participants'' opinions on their personal willingness and their group''s suitability to be involved in devolved decision making, desired type of decision-making involvement, information preferences, preferred areas of decision-making involvement and preferred composition of decision-making bodies. RESULTS: Mean attendance at each meeting was 9.6 citizens. Although there were some significant differences in opinion among the five potential decision-making groups, there were few differences among citizens from different geographic areas. A total of 189 (72%) of people polled were personally willing to take on a role involving responsibility for overall decision-making, but far fewer thought that their group was suited to taking on responsibility (30%) or a consulting role (55%). Elected officials were the most willing (85% personally willing, 50% thought their group was suitable) and randomly selected citizens the least willing (60% personally willing, 17% thought their group was suitable) to take responsibility for overall decision making. Most citizens polled indicated less interest in involvement in specific types of decisions, except for planning and setting priorities, than in overall decision making. Only 24 participants (9%) rated their own group as suitable to take responsibility for raising revenue, 91 (33%) deemed their group suited to distribution of funds and 108 (39%) felt their group was suitable for management of services. People in all five groups ranked health care needs (mean rank 1.5 out of four options) as the most important and preferences (mean rank 3.6) as the least important information. They rated a combination body involving several community groups as the most suitable overall decision-making body (8.8 on 10-point scale). Participants favoured the representation of elected officials, the provincial government and experts on combination bodies responsible for the specific types of decisions. Overall, as the complexity of devolved decision making became clear, participants tended to assign authority to traditional decision makers such as elected officials, experts and the provincial government, but also favoured a consulting role for attendees at town-hall meetings (i.e., interested citizens). CONCLUSION: There are significant differences among groups in the community in their willingness to be involved, desired roles and representation in devolved decision making on health care and social services in Ontario.     

Illness in childhood predicts face preferences in adulthood

The value of different mate choices may depend on the local pathogen ecology and on personal infection susceptibility: when there is a high risk of infection, choosing a healthy or immunocompetent mate may be particularly important. Frequency of childhood illness may act as a cue of the ecological and immunological factors relevant to mate preferences. Consistent with this proposal, we found that childhood illness – and frequency of diarrhea in particular – was positively correlated with preferences for exaggerated sex-typical characteristics in opposite-sex, but not same-sex, faces. Moreover, this relationship was stronger among individuals with poorer current health. These data suggest that childhood illness may play a role in calibrating adult mate preferences and have implications for theories of disease-avoidance psychology, life-history strategy and cross-cultural differences in mate preferences.     

Impact of early personal‐history characteristics on the Pace of Aging: implications for clinical trials of therapies to slow aging and extend healthspan

Therapies to extend healthspan are poised to move from laboratory animal models to human clinical trials. Translation from mouse to human will entail challenges, among them the multifactorial heterogeneity of human aging. To inform clinical trials about this heterogeneity, we report how humans’ pace of biological aging relates to personal‐history characteristics. Because geroprotective therapies must be delivered by midlife to prevent age‐related disease onset, we studied young‐adult members of the Dunedin Study 1972–73 birth cohort (n = 954). Cohort members’ Pace of Aging was measured as coordinated decline in the integrity of multiple organ systems, by quantifying rate of decline across repeated measurements of 18 biomarkers assayed when cohort members were ages 26, 32, and 38 years. The childhood personal‐history characteristics studied were known predictors of age‐related disease and mortality, and were measured prospectively during childhood. Personal‐history characteristics of familial longevity, childhood social class, adverse childhood experiences, and childhood health, intelligence, and self‐control all predicted differences in cohort members’ adulthood Pace of Aging. Accumulation of more personal‐history risks predicted faster Pace of Aging. Because trials of anti‐aging therapies will need to ascertain personal histories retrospectively, we replicated results using cohort members’ retrospective personal‐history reports made in adulthood. Because many trials recruit participants from clinical settings, we replicated results in the cohort subset who had recent health system contact according to electronic medical records. Quick, inexpensive measures of trial participants’ early personal histories can enable clinical trials to study who volunteers for trials, who adheres to treatment, and who responds to anti‐aging therapies.     

Lifestyle modifications to prevent and control hypertension. 2. Recommendations on obesity and weight loss. Canadian Hypertension Society,Canadian Coalition for High Blood Pressure Prevention and Control,Laboratory Centre for Disease Control at Health Canada,Heart and Stroke Foundation of Canada

OBJECTIVE: To provide updated, evidence-based recommendations concerning the effects of weight loss and maintenance of healthy weight on the prevention and control of hypertension in otherwise healthy adults (except pregnant women). OPTIONS: The main options are to attain and maintain a healthy body weight (body mass index [BMI] 20-25 kg/m2) or not to do so. For those at risk for hypertension, weight loss and maintenance of healthy weight may prevent the condition. For those who have hypertension, weight loss and maintenance of healthy weight may reduce or obviate the need for antihypertensive medications. OUTCOMES: The health outcome considered was change in blood pressure. Because of insufficient evidence, no economic outcomes were considered. EVIDENCE: A MEDLINE search was conducted for the years 1992-1996 with the terms hypertension and obesity in combination and antihypertensive therapy and obesity in combination. Other relevant evidence was obtained from the reference lists of the articles identified, from the personal files of the authors and through contacts with experts. The articles were reviewed, classified according to study design and graded according to level of evidence. VALUES: A high value was placed on the avoidance of cardiovascular morbidity and premature death caused by untreated hypertension. BENEFITS, HARMS AND COSTS: Weight loss and the maintenance of healthy body weight reduces the blood pressure of both hypertensive and normotensive people. The indirect benefits of a health body weight are well known. The negative effects of weight loss are primarily the frustrations associated with attaining and maintaining a healthy weight. The costs associated with weight loss programs were not measured in the studies reviewed. RECOMMENDATIONS: (1) It is recommended that health care professionals determine weight (in kilograms), height (in metres) and BMI for all adults. (2) To reduce blood pressure in the population at large, it is recommended that Canadians attain and maintain a healthy BMI (20-25). (3) All overweight hypertensive patients (BMI greater than 25) should be advised to reduce their weight. VALIDATION: These recommendations are similar to those of the World Hypertension League, the National High Blood Pressure Education Program Working Group on Primary Prevention of Hypertension, the Canadian Hypertension Society and the Canadian Coalition for High Blood Pressure Prevention and Control. They have not been clinically tested. SPONSORS: The Canadian Hypertension Society, the Canadian Coalition for High Blood Pressure Prevention and Control, the Laboratory Centre for Disease Control at Health Canada, and the Heart and Stroke Foundation of Canada.     

How Do Women Prepare for Pregnancy? Preconception Experiences of Women Attending Antenatal Services and Views of Health Professionals

Main objective

To determine the extent to which women plan and prepare for pregnancy.

Methods

Cross-sectional questionnaire survey of pregnant women attending three maternity services in London about knowledge and uptake of preconception care; including a robust measure of pregnancy planning, and phone interviews with a range of health care professionals.

Main results

We recruited 1173/1288 (90%) women, median age of 32 years. 73% had clearly planned their pregnancy, 24% were ambivalent and only 3% of pregnancies were unplanned. 51% of all women and 63% of those with a planned pregnancy took folic acid before pregnancy. 21% of all women reported smoking and 61% reported drinking alcohol in the 3 months before pregnancy; 48% of smokers and 41% of drinkers reduced or stopped before pregnancy. The 51% of all women who reported advice from a health professional before becoming pregnant were more likely to adopt healthier behaviours before pregnancy [adjusted odds ratios for greatest health professional input compared with none were 2.34 (95% confidence interval 1.54–3.54) for taking folic acid and 2.18 (95% CI 1.42–3.36) for adopting a healthier diet before pregnancy]. Interviews with 20 health professionals indicated low awareness of preconception health issues, missed opportunities and confusion about responsibility for delivery of preconception care.

Significance of the findings

Despite a high level of pregnancy planning, awareness of preconception health among women and health professionals is low, and responsibility for providing preconception care is unclear. However, many women are motivated to adopt healthier behaviours in the preconception period, as indicated by halving of reported smoking rates in this study. The link between health professional input and healthy behaviour change before pregnancy is a new finding that should invigorate strategies to improve awareness and uptake of pre-pregnancy health care, and bring wider benefits for public health.     

Addressing Parental Vaccine Concerns: Engagement,Balance, and Timing

The recent United States measles epidemic has sparked another contentious national discussion about childhood vaccination. A growing number of parents are expressing concerns about the safety of vaccines, often fueled by misinformation from the internet, books, and other nonmedical sources. Many of these concerned parents are choosing to refuse or delay childhood vaccines, placing their children and surrounding communities at risk for serious diseases that are nearly 100% preventable with vaccination. Between 10% and 15% of parents are asking physicians to space out the timing of vaccines, which often poses an ethical dilemma for physicians. This trend reflects a tension between personal liberty and public health, as parents fight to control the decisions that affect the health of their children and public health officials strive to maintain high immunization rates to prevent outbreaks of vaccine-preventable diseases. Interventions to address this emerging public health issue are needed. We describe a framework by which web-based interventions can be used to help parents make evidence-based decisions about childhood vaccinations.

About the Author

Jason Glanz, PhD, is an epidemiologist and senior research investigator at Kaiser Permanente Colorado, Institute for Health Research. He is also an assistant professor in the Department of Epidemiology, Colorado School of Public Health. Dr. Glanz’s research focuses on vaccine safety and vaccine hesitancy. Dr. Glanz is currently a principal investigator with the Vaccine Safety Datalink, a national Centers for Disease Control and Prevention (CDC)-funded project that examines the safety of vaccines. Dr. Glanz also leads research efforts to develop risk communication strategies to help reduce parental vaccination concerns.     

The Neural Basis of Responsibility Attribution in Decision-Making

Social responsibility links personal behavior with societal expectations and plays a key role in affecting an agent’s emotional state following a decision. However, the neural basis of responsibility attribution remains unclear. In two previous event-related brain potential (ERP) studies we found that personal responsibility modulated outcome evaluation in gambling tasks. Here we conducted a functional magnetic resonance imaging (fMRI) study to identify particular brain regions that mediate responsibility attribution. In a context involving team cooperation, participants completed a task with their teammates and on each trial received feedback about team success and individual success sequentially. We found that brain activity differed between conditions involving team success vs. team failure. Further, different brain regions were associated with reinforcement of behavior by social praise vs. monetary reward. Specifically, right temporoparietal junction (RTPJ) was associated with social pride whereas dorsal striatum and dorsal anterior cingulate cortex (ACC) were related to reinforcement of behaviors leading to personal gain. The present study provides evidence that the RTPJ is an important region for determining whether self-generated behaviors are deserving of praise in a social context.     

Occupational health and safety risk assessment in hospitals: A case study using two-stage fuzzy multi-criteria approach

Occupational Health and Safety (OHS) is a basis to reduce occupational accidents in an acceptable level, and it covers employee health, safety, and welfare in the workplaces. Hospitals as the largest employer group in healthcare industry in Turkey face major hazards categorized as chemical, biological, physical, ergonomic, and psychosocial risks. Although Turkey demonstrates rapid economic growth, OHS practices have not been fully put into practice, and necessary attention has not been paid to the health industry. For this reason, this paper aims to assess risks for health staff, contribute for planning of health services, and enhance regulations. A case study was carried out in a leading hospital in Turkey using a two-stage fuzzy multi-criteria approach, which provides more consistency in decision-making process and gives an appropriate final rank of hazard types. Fuzzy Analytic Hierarchy Process (FAHP) is used in weighing five risk parameters, which are severity, occurrence, undetectability, sensitivity to maintenance non-execution, and sensitivity to personal protective equipment (PPE) non-utilization. The fuzzy VIKOR (FVIKOR) approach is then applied for prioritization of hazard types in each department of the hospital. On conclusion of the hazard control hierarchy, measures are overtaken for the hazards, and areas open for improvement are presented.     

大学校园的健康服务功能及要素构成—以北京为例

作为教学科研场所的大学校园,可以提供重要的健康服务功能。但是,除了为师生提供服务,市民是否也应该享受大学校园提供的健康服务缺乏清晰的判定。以大学校园承载的健走、跑步等线性体育活动为研究对象,利用在线用户最多的"咕咚软件"获取运动健身活动的VGI共享数据,结合GIS分析技术,从个体属性、运动时间、运动空间、运动模式4个维度,分析行为与空间的关系,通过比对城市空间和校园空间的健身特征,对高校提供的健康服务功能进行解析,判定大学校园提供的健康服务功能。研究表明,校园空间承载着将近30%的城市健身行为,对师生和市民都具有较高的支持潜力。校园健身活动的主要空间载体是校园道路、体育设施和景观空间,空间类型多元化可以有效地促进体育活动。同时,校园的安全效应也增强了校园健身的吸引力。因此,合理有效的校园管理可以提升校园对城市的健康服务效能。     

The Canadian Institute of Aging: knowledge, innovation and action

Led by innovation, leadership, transparency and excellence, the Institute of Aging provides a focal point for Canadian research on aging and pursues the fundamental goal of advancing knowledge in the field of aging to improve the quality of life and health of older Canadians. The Institute has carried out a range of important national and international strategic initiatives in aging, and has become influential in leveraging funding, enhancing research capacity and creating a new impetus in research on aging in Canada. The Institute engages and supports the scientific community, encourages interdisciplinary and integrative health research and fosters not only on the creation of new knowledge, but also on the translation of that knowledge into improved health, a strengthened health care system, and new health products and services for Canadians. The IA focuses on five priority areas of research: healthy and successful aging, biological mechanisms of aging, cognitive impairment in aging, aging and maintenance of autonomy, and finally, health services and policies relating to older people. The efforts of the IA are guided by five strategic orientations: to lead in the development and definition of strategic directions for Canadian research on aging ; to build research capacity in the field of aging ; to foster the dissemination, transfer and translation of research findings in policies, interventions, services and products ; to promote the importance of, and the need for, a research community in aging ; and to develop and support capacity-building and strategic research initiatives in the field of aging.     

Diet and Health

The role of diet in personal health maintenance is important whether a person is trying to stay healthy or to treat diet-related diseases such as hypercholesterolemia, hypertension, diabetes mellitus or obesity. Dietary recommendations include limiting fat to 30% and protein to 20% of total calories, with the remaining 50% coming from carbohydrate. Maintaining dietary changes for long periods is very difficult for many persons. Specific self-management skills may ease the task.     

Community Mental Health

The distinctive feature of a community mental health program is the comprehensive responsibility assumed for the mental health as well as the psychiatric needs of a particular area. Not only must programs provide psychiatric services but, in addition, they are concerned with assessing the community''s psychiatric and mental health status; with preventive services; with mental health education; with contributions directed toward the solution of certain social problems; as well as with a variety of other indirect services, including, importantly, mental health consultation. This form of consultation can support and help the large number of community care-takers whose contribution is vital to the promotion of community mental health.     

Genetic counseling for beta-thalassemia trait following health screening in a health maintenance organization: comparison of programmed and conventional counseling.

Providing adequate counseling of patients identified in genetic screening programs is a major responsibility and expense. Adults in a health maintenance organization, unselected for interest, were screened for beta-thalassemia trait as part of preventive health care. Counseling was provided by either a trained physician (conventional counseling) or by a videotape containing the same information followed by an opportunity to question a trained physician (programmed counseling). Immediately before and after counseling, knowledge of thalassemia, knowledge of genetics, and mood change were assessed by questionnaire. Comparable mood changes and similar learning about thalassemia and genetics occurred with both counseling methods. Thus, as judged by immediate effects on knowledge and mood, videotaped instruction can greatly reduce professional time required for genetic counseling and facilitate the incorporation of genetic screening into primary health care.