{"id":1106,"date":"2017-06-14T09:18:41","date_gmt":"2017-06-14T09:18:41","guid":{"rendered":"http:\/\/codata.org\/blog\/?p=1106"},"modified":"2017-06-14T09:18:41","modified_gmt":"2017-06-14T09:18:41","slug":"humans-of-data-016","status":"publish","type":"post","link":"https:\/\/codata.org\/blog\/2017\/06\/14\/humans-of-data-016\/","title":{"rendered":"Humans of Data 16"},"content":{"rendered":"

\"IMG_3801-edit1-900x600\"<\/a>“I wonder whether any ethics are applied in collection of samples of Ebola and HIV\/AIDS in emergency situations.\u00a0 When I talk to doctors about it, they are aware that some researchers from the developed world provide expertise and fund research in pandemic situations.\u00a0 But there are issues on data collection ethics based on informed consent by subjects that deserve scrutiny, given the emergency situations and language barriers under which data is collected.\u00a0 Are there Memoranda of Understanding between African governments and researchers under these conditions?\u00a0 There is a need for transparency and openness.\u00a0 Given the extensive ethical regulations for research on human subjects in the developed world, African countries – which are prone to pandemic disease problems – must engage in the discourse on ethics of data collected under the unique situations that they experience.<\/p>\n

It\u2019s the same in the humanities and social sciences: researchers come and take and go.\u00a0 It is rare for research projects to include funding in the initial project proposal for reporting back to the subjects of the research.\u00a0 In Botswana, there was a national scan for indigenous knowledge.\u00a0 We were promised there would be a report back [to the community], but the [research team] never came back.\u00a0 And then researchers are surprised that participants don\u2019t trust them!<\/p>\n

Colonialism was first about land resources.\u00a0 Now, without open access, globalisation of research may become the next wave of colonisation.\u00a0 Lower and middle income country researchers need to engage in open debates among themselves on the ownership of data, and how to develop collaboration from collection to analysis with a view to facilitating shared benefits and innovative re-use.\u00a0 Only in this way will the issues of intellectual property rights be negotiated in an equal exchange.\u00a0 All researchers \u2013 but especially Africa\u2019s researchers \u2013 should reflect on the necessary policy and regulatory frameworks that should be negotiated with local institutions and national governments, as part of their intellectual contributions to evidence-based solutions and sustainable development.<\/p>\n

Openness is about exposing your strengths and weaknesses.\u00a0 No one should be intimidated that some have more money.\u00a0 Others have ideas.”<\/p>\n","protected":false},"excerpt":{"rendered":"

“I wonder whether any ethics are applied in collection of samples of Ebola and HIV\/AIDS in emergency situations.\u00a0 When I talk to doctors about it, they are aware that some researchers from the developed world provide expertise and fund research in pandemic situations.\u00a0 But there are issues on data collection ethics based on informed consent […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[22,24,21],"tags":[],"class_list":["post-1106","post","type-post","status-publish","format-standard","hentry","category-humans-of-data","category-research-data-alliance","category-scidatacon-2016"],"_links":{"self":[{"href":"https:\/\/codata.org\/blog\/wp-json\/wp\/v2\/posts\/1106","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/codata.org\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/codata.org\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/codata.org\/blog\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/codata.org\/blog\/wp-json\/wp\/v2\/comments?post=1106"}],"version-history":[{"count":1,"href":"https:\/\/codata.org\/blog\/wp-json\/wp\/v2\/posts\/1106\/revisions"}],"predecessor-version":[{"id":1107,"href":"https:\/\/codata.org\/blog\/wp-json\/wp\/v2\/posts\/1106\/revisions\/1107"}],"wp:attachment":[{"href":"https:\/\/codata.org\/blog\/wp-json\/wp\/v2\/media?parent=1106"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/codata.org\/blog\/wp-json\/wp\/v2\/categories?post=1106"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/codata.org\/blog\/wp-json\/wp\/v2\/tags?post=1106"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}