Enabling the use of health data for research : developing a POPIA code of conduct for research in South Africa

Globally, there has been a move toward 'open science' that includes the sharing of health data for research. The importance of data sharing for research is generally acknowledged, but this must only be done with legal and ethical procedures and protections in place. The use and sharing of health data for research in South Africa has changed with the coming into force of the Protection of Personal Information Act (POPIA). POPIA should ensure greater transparency and accountability in the use of personal information. POPIA, however, adopts a principle-based approach to the regulation of personal information, and there is a lack of clarity and uncertainty in the application of some of these principles to the use of health data for research. POPIA provides for sector-specific responses through the development of codes of conduct. In this article, we discuss the need for a code of conduct for health research, and an approach that could be adopted in its development.http://www.sajbl.org.zaImmunolog

Ethical and practical issues to consider in the governance of genomic and human research data and data sharing in South Africa: a meeting report

Genomic research and biobanking has undergone exponential growth in Africa and at the heart of this research is the sharing of biospecimens and associated clinical data amongst researchers in Africa and across the world. While this move towards open science is progressing, there has been a strengthening internationally of data protection regulations that seek to safeguard the rights of data subjects while promoting the movement of data for the benefit of research. In line with this global shift, many jurisdictions in Africa are introducing data protection regulations, but there has been limited consideration of the regulation of data sharing for genomic research and biobanking in Africa. South Africa (SA) is one country that has sought to regulate the international sharing of data and has enacted the Protection of Personal Information Act (POPIA) 2013 that will change the governance and regulation of data in SA, including health research data, once it is in force. To identify and discuss challenges and opportunities in the governance of data sharing for genomic and health research data in SA, a two-day meeting was convened in February 2019 in Cape Town, SA with over 30 participants with expertise in law, ethics, genomics and biobanking science, drawn from academia, industry, and government. This report sets out some of the key challenges identified during the workshop and the opportunities and limitations of the current regulatory framework in SA

Privacy rights of human research participants in South Africa must be taken seriously

The Protection of Personal Information Act 4 of 2013 (POPIA) was enacted by the South African (SA) parliament in 2013 after a long process of public consultation. To allow all sectors of SA society sufficient time to prepare to be compliant with POPIA, the SA government deferred the entering into force of the substantive provisions of POPIA for several years. Throughout this hiatus period, POPIA was widely publicised in the SA media, as is evident from any internet search.http://www.samj.org.zaam2021Immunolog

Safeguarding the future of genomic research in South Africa: Broad consent and the protection of Personal Information Act No. 4 of 2013

Genomic research has been identified in South Africa (SA) as important in developing a strong bio-economy that has the potential to improve human health, drive job creation and offer potential solutions to the disease burden harboured by low- and middle-income countries. Central to the success of genomic research is the wide sharing of biological samples and data, but the true value of data can only be unlocked if there are laws and policies in place that foster the legal and ethical sharing of genomic data. The introduction and entry into force of SA's Protection of Personal Information Act (POPIA) No. 4 of 2013 is to be welcomed, but the wording of POPIA as it pertains to consent for the processing of personal information for research purposes has sparked a debate about the legal status of broad consent. We argue that a purposive interpretation of the legislation would permit broad consent for the processing of personal information for research. Although there are ongoing debates surrounding the ethical use of broad consent in Africa, the objective of this article is not to engage with the ethics of broad consent itself, but rather to focus on the legal status of broad consent for genomic data sharing under POPIA

The Lantern, 2009-2010

• I\u27m Pregnant. It\u27s Yours • The Nightmare • What Death Became After Cyparissus • Substances • Ain\u27t That a Man? • Portrait • The 100th Chemo • Looking into Her Toy Box with a Lover • They Used to Talk About Burning Cities • MESSAGE: Absence for Allen Ginsberg • Lunch with Candide • Behold! Man of Unbelief! Behold! • Dream #1 Final Strophe • Patience (Things You Will Discover) • Four Years • He Falls Like Leaves • The Quilt • Ariel (Turning Tricks at Fisherman\u27s Wharf, Monterey, California) • Extranjera • The Taste of Morning • Fear of Glory • The Rum Bottle\u27s Fortune • While Thinking of What to Write • Dying in Spring • Tutte le Eta di Firenze • Token • A House Grows Into Itself • Gravity • Father with the Skyy • He Says He Dreams of Me • Myth • Sun-Veins and Wishbones • Attempts at Bravery • One Boy in Four Parts • Blacktop Rollin\u27 • Getting My Feet Wet • The Long Ride After Ending • Wet Tongues and Sweaty Cotton • Norman Bates is My Mother • Sims Trek • Tomorrow Comes Today • The Writer\u27s Process • This Too Was Real • Venus from the Waves • Shark • Monday\u27s Expectations • Recognition • The Black Shoes • Climax • Andrew • Bottles • Calle de Cusco • God in the Machine • The 26th of December • Lollipop Lollipop • When Dinosaurs Roamed the Earth • Meaning • Jeffrey • Looking • Jagged Edges • Fading Storm • Shoes • Cover Image: Death by Chocolatehttps://digitalcommons.ursinus.edu/lantern/1175/thumbnail.jp

Brain-behaviour modes of covariation in healthy and clinically depressed young people

Abstract: Understanding how variations in dimensions of psychometrics, IQ and demographics relate to changes in brain connectivity during the critical developmental period of adolescence and early adulthood is a major challenge. This has particular relevance for mental health disorders where a failure to understand these links might hinder the development of better diagnostic approaches and therapeutics. Here, we investigated this question in 306 adolescents and young adults (14–24 y, 25 clinically depressed) using a multivariate statistical framework, based on canonical correlation analysis (CCA). By linking individual functional brain connectivity profiles to self-report questionnaires, IQ and demographic data we identified two distinct modes of covariation. The first mode mapped onto an externalization/internalization axis and showed a strong association with sex. The second mode mapped onto a well-being/distress axis independent of sex. Interestingly, both modes showed an association with age. Crucially, the changes in functional brain connectivity associated with changes in these phenotypes showed marked developmental effects. The findings point to a role for the default mode, frontoparietal and limbic networks in psychopathology and depression

CSF1R inhibitor JNJ-40346527 attenuates microglial proliferation and neurodegeneration in P301S mice

Neuroinflammation and microglial activation are significant processes in Alzheimer’s disease pathology. Recent genome-wide association studies have highlighted multiple immune-related genes in association with Alzheimer’s disease, and experimental data have demonstrated microglial proliferation as a significant component of the neuropathology. In this study, we tested the efficacy of the selective CSF1R inhibitor JNJ-40346527 (JNJ-527) in the P301S mouse tauopathy model. We first demonstrated the anti-proliferative effects of JNJ-527 on microglia in the ME7 prion model, and its impact on the inflammatory profile, and provided potential CNS biomarkers for clinical investigation with the compound, including pharmacokinetic/pharmacodynamics and efficacy assessment by TSPO autoradiography and CSF proteomics. Then, we showed for the first time that blockade of microglial proliferation and modification of microglial phenotype leads to an attenuation of tau-induced neurodegeneration and results in functional improvement in P301S mice. Overall, this work strongly supports the potential for inhibition of CSF1R as a target for the treatment of Alzheimer’s disease and other tau-mediated neurodegenerative diseases