scholarly journals International Journal of Translational Medical Research and Public Health

2019 ◽  
Keyword(s):  
Public Health ◽  
Medical Research ◽  
Translational Medical Research

scholarly journals The academic viewpoint on Big data and patient data ownership (as seen in the scientific literature)

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
I Mircheva ◽  
M Mirchev
Keyword(s):  
Public Health ◽  
Big Data ◽  
Medical Research ◽  
Information And Communication Technologies ◽  
Patient Information ◽  
Scientific Literature ◽  
Medical Data ◽  
Patient Data ◽  
Academic Community ◽  
Ethical Challenges

Abstract Background Ownership of patient information in the context of Big Data is a relatively new problem, apparently not yet fully understood. There are not enough publications on the subject. Since the topic is interdisciplinary, incorporating legal, ethical, medical and aspects of information and communication technologies, a slightly more sophisticated analysis of the issue is needed. Aim To determine how the medical academic community perceives the issue of ownership of patient information in the context of Big Data. Methods Literature search for full text publications, indexed in PubMed, Springer, ScienceDirect and Scopus identified only 27 appropriate articles authored by academicians and corresponding to three focus areas: problem (ownership); area (healthcare); context (Big Data). Three major aspects were studied: scientific area of publications, aspects and academicians' perception of ownership in the context of Big Data. Results Publications are in the period 2014 - 2019, 37% published in health and medical informatics journals, 30% in medicine and public health, 19% in law and ethics; 78% authored by American and British academicians, highly cited. The majority (63%) are in the area of scientific research - clinical studies, access and use of patient data for medical research, secondary use of medical data, ethical challenges to Big data in healthcare. The majority (70%) of the publications discuss ownership in ethical and legal aspects and 67% see ownership as a challenge mostly to medical research, access control, ethics, politics and business. Conclusions Ownership of medical data is seen first and foremost as a challenge. Addressing this challenge requires the combined efforts of politicians, lawyers, ethicists, computer and medical professionals, as well as academicians, sharing these efforts, experiences and suggestions. However, this issue is neglected in the scientific literature. Publishing may help in open debates and adequate policy solutions. Key messages Ownership of patient information in the context of Big Data is a problem that should not be marginalized but needs a comprehensive attitude, consideration and combined efforts from all stakeholders. Overcoming the challenge of ownership may help in improving healthcare services, medical and public health research and the health of the population as a whole.

scholarly journals The principles of medical ethics and medical research

1999 ◽  
Vol 15 (suppl 1) ◽  
pp. S7-S13 ◽  
Author(s):  
John Harris
Keyword(s):  
Public Health ◽  
Medical Ethics ◽  
Medical Research ◽  
Late Onset ◽  
Human Subjects ◽  
Predictive Testing ◽  
Public Health Issue ◽  
Public Health Medicine ◽  
International Ethics ◽  
Ongoing Research

In this paper I discuss the application of the principles of medical ethics and of medical research to the case of children and others whose consent to treatment and to research is problematic. Public health depends substantially on the possibility of ongoing research into all conditions which affect the health of the people. Constraints on this research are therefore a public health issue. Moreover and more importantly the possibility of predictive testing and indeed of screening for health-relevant conditions is an important public health tool, and limitations on the use of this tool are of great significance to public health medicine. Having considered the particular problems created by research and predictive testing on children for late-onset conditions I go on to discuss research on those whose consent is problematic more generally. I conclude with radical recommendations for the reform of The Declaration of Helsinki and of the International Ethics Guidelines for Biomedical Research Involving Human Subjects, prepared by the Council for International Organizations of Medical Sciences (CIOMS).

scholarly journals Keep Politics out of Funding Decisions for Medical Research and Public Health

2020 ◽  
Vol 103 (3) ◽  
pp. 931-932 ◽  
Author(s):  
Philip J. Rosenthal ◽  
Daniel G. Bausch ◽  
Karen A. Goraleski ◽  
David R. Hill ◽  
Julie A. Jacobson ◽  
...  
Keyword(s):  
Public Health ◽  
Medical Research

scholarly journals Global informetric perspective studies on translational medical research

2013 ◽  
Vol 13 (1) ◽  
Author(s):  
Qiang Yao ◽  
Peng-Hui Lyu ◽  
Fei-Cheng Ma ◽  
Lan Yao ◽  
Shi-Jing Zhang
Keyword(s):  
Medical Research ◽  
Translational Medical Research

scholarly journals Morocco’s First Biobank: Establishment, Ethical Issues, Biomedical Research Opportunities, and Challenges

2020 ◽  
Vol 2020 ◽  
pp. 1-11
Author(s):  
Saida Lhousni ◽  
Karam Yahya Belmokhtar ◽  
Ihab Belmokhtar ◽  
Mounia Elidrissi Errahhali ◽  
Manal Elidrissi Errahhali ◽  
...  
Keyword(s):  
Medical Research ◽  
Biomedical Research ◽  
Ethical Issues ◽  
Blood Donation ◽  
Sex Differentiation ◽  
White Blood Cells ◽  
Translational Medical Research ◽  
Biomedical Data ◽  
Sample Collection ◽  
Healthy Donors

Background. Biobanks are highly organized infrastructures that allow the storage of human biological specimens associated with donors’ personal and clinical data. These infrastructures play a key role in the development of translational medical research. In this context, we launched, in November 2015, the first biobank in Morocco (BRO Biobank) in order to promote biomedical research and provide opportunities to include Moroccan and North African ethnic groups in international biomedical studies. Here, we present the setup and the sample characteristics of BRO Biobank. Methods. Patients were recruited at several departments of two major health-care centers in the city of Oujda. Healthy donors were enrolled during blood donation campaigns all over Eastern Morocco. From each participant, personal, clinical, and biomedical data were collected, and several biospecimens were stored. Standard operating procedures have been established in accordance with international guidelines on human biobanks. Results. Between November 2015 and July 2020, 2446 participants were recruited into the BRO Biobank, of whom 2013 were healthy donors, and 433 were patients. For healthy donors, the median age was 35 years with a range between 18 and 65 years and the consanguinity rate was 28.96%. For patients, the median age was 11 years with a range between 1 day and 83 years. Among these patients, 55% had rare diseases (hemoglobinopathies, intellectual disabilities, disorders of sex differentiation, myopathies, etc.), 13% had lung cancer, 4% suffered from hematological neoplasms, 3% were from the kidney transplantation project, and 25% had unknown diagnoses. The BRO Biobank has collected 5092 biospecimens, including blood, white blood cells, plasma, serum, urine, frozen tissue, FFPE tissue, and nucleic acids. A sample quality control has been implemented and suggested that samples of the BRO Biobank are of high quality and therefore suitable for high-throughput nucleic acid analysis. Conclusions. The BRO Biobank is the largest sample collection in Morocco, and it is ready to provide samples to national and international research projects. Therefore, the BRO Biobank is a valuable resource for advancing translational medical research.

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