Calvin W. L. Ho and Adrienne Hunt are proud to present volume 11, issue 2 of June 2019, with a special section on Big Data Ethics, edited by Dr Owen Schaefer. In this issue, we also continue the discussion on the Ethics of Biodiversity Conservation, started in our December 2018 issue.
In 2018, we concluded the year with the publication of a special journal issue on the bioethical aspects of biodiversity conservation. It is a topic that, until now, has not received much attention from this journal, even though the Asia Pacific region is exceptionally rich in biodiversity. Therefore, as a journal, we reiterate our intent to sustain a forum for cross-disciplinary dialogue that will hopefully add clarity to the actions that are needed, as well as the normative justifications for them. It is therefore fitting that we begin this second journal issue for the year with a reaction by Sébastien Duffillot to Nicolas Lainé’s paper that was published in the aforementioned special issue, and a response by him and Serge Morand to this reaction. In the same vein, we are delighted to present a paper by Serge Morand and Claire Lajaunie, which seeks to draw together a number of themes that underscore the special issue on the ethics of biodiversity conservation that they guest edited.
Additionally, we are delighted to present an instructive commentary on no-fault liability in healthcare by Kanny Ooi in response to a paper by Shivkrit Rai and Vishwas Devaiah, published by this journal earlier in the year.
This is followed by a special section of the journal issue on Big Data, ably put together by Owen Schaefer. ‘Big Data’ is characterised not only by the very large quantity of data that is generated, but also by the depth of detail the data contain and the ability of researchers to rapidly transmit, link and analyse the data. In this context, perennial ethical concerns such as obtaining valid informed consent and respecting privacy take on a new character, and it is not clear if existing approaches to these ethical issues are still fit for purpose. The Science, Health and Policy-relevant Ethics in Singapore (SHAPES) initiative is currently engaged in responding to these challenges. SHAPES, funded by Singapore’s National Medical Research Council and housed by the NUS Centre for Biomedical Ethics, conducts analyses and research on ethical issues of relevance to those involved in the practice and oversight of biomedical researchers. In March 2018, SHAPES convened a symposium on big data ethics to develop an understanding of the most important and under-addressed issues in the area. Authors of the papers published in this special section were present at that symposium, to discuss and deliberate over their perspectives. And indeed, all three papers present important ideas that lie at the forefront of these debates.
Finally, we take this opportunity to introduce the forthcoming meeting of the Global Forum on Bioethics in Research (GFBR), which will take place in Singapore on 12 and 13 November 2019. The GFBR is the principal global platform for debate on ethical issues pertaining to international health research. Its core aims are to give voice to low- and middle income country perspectives in debates about global health research ethics and to promote collaboration. The GFBR meets annually to address a specific topic in research ethics and is case study based. A key feature of the GFBR is to bring together colleagues who are upcoming and established in their field so, as one participant put it, they can exchange ideas while slowly passing on the torch to the next generation. This year’s meeting focuses on ‘Genome editing for human benefit: ethics, engagement and governance’. The meeting responds to the quickening pace of innovation in this field, which has brought a series of ethical, social and legal questions forward. Clearly, the time is right for GFBR to address the global issue of genome editing research, in what promises to be another stimulating meeting, and we look forward to meeting some of our readers who will be participating in the GFBR later in the year.
Our publisher Springer Nature allows you to read all articles completely, even if you do not have have a subscription, therefore:
- Clicking on the title will bring you to a read-only version of the complete article, even if you are not subscribed to ABR (unless the article is Open Access anyway).
- Clicking on the DOI number will allow you to download and print the article, if you have a subscription for ABR.
Biodiversity, Big Data and Genome Editing
Editorial by Calvin W. L. Ho and Adrienne Hunt
Re: Asian Elephant Conservation: Too Elephantocentric? Towards a Biocultural Approach of Conservation—Response to Duffillot: a Long Road Ahead
Nicolas Lainé and Serge Morand
Linking Biodiversity with Health and Well-being: Consequences of Scientific Pluralism for Ethics, Values and Responsibilities
Serge Morand and Claire Lajaunie
Ethics in the Era of Big Data
Section Editorial by Owen Schaefer
Communicable Disease Surveillance Ethics in the Age of Big Data and New Technology
Gwendolyn L. Gilbert, Chris Degeling and Jane Johnson
doi: 10.1007/s41649-019-00087-1 [Open Access]
Hypocrisy around Medical Patient Data: Issues of Access for Biomedical Research, Data Quality, Usefulness for the Purpose and Omics Data as Game Changer
Erwin Tantoso, Wing-Cheong Wong, Wei Hong Tay, Joanne Lee, Swati Sinha, Birgit Eisenhaber and Frank Eisenhaber
doi: 10.1007/s41649-019-00085-3 [Open Access]
Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia?
Mohammad Firdaus Abdul Aziz and Aimi Nadia Mohd Yusof