Article 8 , on "the processing of special categories of data," holds a number of provisions that could be problematic for health research. ¶ 1. Member States shall prohibit the processing of personal data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, trade-union membership, and the processing of dat
Obviously some kinds of data are felt by data-subjects or the public in general to be especially sensitive. A commonly cited example is that HIV–AIDS data are much more sensitive than, say, data about wrist fracture. Whether sensitivity is somehow justified will always be debatable within the context. But for purposes of ethical practices, polic
Privacy has variously been cited as a rationale to cover a great many situations. 23 Here we can just note a few potentially relevant for health research. Among data-subject rights claimed have been:
Versions of an omnibus "Medical Records Confidentiality Act" are being considered by the U.S. Congress, as is a "Genetic Confidentiality and Discrimination Act." Some States are revising their medical-privacy laws covering information on mental health, HIV–AIDS status, or genetics. All of these will have implications for research.
The Report identifies many problem areas. The following are four large groups of issues that, while not entirely new, are growing rapidly in scale and complexity, and must urgently be attended to: Secondary uses of data, and data linking Research on private-sector health data Cybersecurity Genetic privacy. Issue cluster: Secondary res
New approaches are being taken in providing health care, which is posing new research questions and changing the setting with which much research is conducted. Much more research now is being performed on data from private-sector managed-care organizations, for instance. Also, new approaches are being taken in research, such as elaborate compute
HHS Strategic Goals and Objectives - FY 2001 . Objective 6.7 - Strengthen Mechanisms for Ensuring the Protection of Human Subjects in Research and the Integrity of the Research Process.
We will strengthen mechanisms for ensuring protection of human subjects by: increasing and enhancing the educational opportunities for clinical investigators and Institutional Review Board (IRB) members and staff to facilitate their understanding and application of federal requirements for the protection of human subjects.
The growth of managed care has had a significant impact on the operations and profitability of clinical laboratories during the past five years. Cost reduction is the major driving force in the industry, and laboratories are in the process of planning strategically to adapt to these changes. As a result, the key market trends in clinical testing s
Most federal involvement with state PHLs is via the CDC. In addition, several other federal health agencies operate laboratories related to public health. FDA, EPA, USDA
The Feasibility of Using Electronic Health Data for Research on Small Populations. Organizational Conditions Required for Research Combining Multiple Data Sources
Because of the previously mentioned limitations with using data from a single organization’s EHR for research, the ability to combine EHR data with other electronic data sources is often needed to strengthen study results, particularly for small populations. Combining EHR data across institutions can allow for a larger sample size to increase th
The Feasibility of Using Electronic Health Data for Research on Small Populations. Population #3: Adolescents with Autism Spectrum Disorders
Autism spectrum disorders (ASDs) are a group of developmental disabilities that range from mild to severe and are characterized by social impairment, difficulty communicating, and repetitive motions or other unusual behaviors. 106 These characteristics are usually noticeable before the age of 3 and remain as a lifelong chronic condition with both
Contents Demonstrating Clinical Validity and Utility Demonstrating Value Reducing Health Disparities Educating and Engaging Providers and Consumers Using Databases to Build Evidence, Inform Decisions
Contents Introduction Literature Review Prevalence Contributing Factors Consequences of Obesity Intervention Research Federal Agency Activities Site Visit to Gila River Indian Community Directions for Future Research
In June 2008, HHS commissioned this white paper to overview the current status of payor systems for coverage and reimbursement of complex molecular
1 See: U.S. Department of Health and Human Services, Administration for Children and Families. 2006. The basics of adoption practice. Available online at: www.Childwelfare.gov/pubs/f_basicsbullentin/.
Current Issues and Options: Coverage and Reimbursement for Complex Molecular Diagnostics This is a policy analysis document developed to inform ongoing discussions regarding certain types of diagnostic tests. Bruce Quinn MD PhD Foley Hoag LLP The views expressed in this report are solely those of the authors and do not necessarily ref
Assessing the Field of Post-Adoption Services: Family Needs, Program Models and Evaluation Issues. Literature Review
Assessing the Field of Post-Adoption Service: Family Needs, Program Models, and Evaluation Issues Literature Review Submitted to: Laura Feig Radel Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation Hubert H. Humphrey Building 200 Independence Avenue, S.W. Washington, DC 20201 Developed
APOE is a gene that comes in a normal or neutral form (allele), known as E3, and two variants, E2 and E4, which have been implicated in vascular and Alzheimer's diseases. The E4 variant is the most important known genetic risk factor for Alzheimer's disease.
Racial and Ethnic Disparities in Alzheimer's Disease: A Literature Review. Possible Reasons for Racial and Ethnic Disparities
Possible reasons for racial and ethnic disparities include factors related to measurement of Alzheimer's disease, genetics, cardiovascular and cerebrovascular disease, socioeconomic factors, cultural differences, and racial and ethnic discrimination. A range of pathways have been suggested that link race and ethnicity with cognitive impairment, so
This study aimed to describe and characterize the published literature on disparities between racial and ethnic groups among individuals with Alzheimer's disease and related dementias. To identify relevant studies, we searched electronic sources for peer-reviewed articles and research reports published through 2014 related to the Alzheimer's popul