Volume 19, Issue 5, May 2019, Page 36-38.

Paediatric genomic research raises particularly challenging questions on whether and under what circumstances to return research results. In the paediatric context, decision-making is guided by the best interests of the child framework, as enshrined in the 1989 international Convention on the Rights of the Child. According to this Convention, rights and responsibilities are shared between children, parents, researchers, and the state. These "relational" obligations are further complicated in the context of genetic research.

This article examines the complex and contemporary issue of the return of research results in biobanks. After suggesting the exclusion of some adjacent issues usually flanking the debate, this article reviews the current practices of biobanks on the disclosure of research results to participants. It then focuses more specifically on the debate in the literature before turning to a review of the typology of recent reforms being put forward.

In 2009, Time magazine named “biobanks” as one of the 10 ideas changing the world. These organized collections of human biological material and associated data have been identified as “vital research tools in the drive to uncover the consequences of human health and disease.” Since their inception, however, biobanks have faced ethical and legal challenges. Whether these pertain to informed consent, access by researchers, commercialization, confidentiality, or governance, biobanks must continue to address jurisdictional matters, operational difficulties, and normative frameworks that (...) strive to stay abreast of current scientific innovation. Yet, with some biobanks now having completed their recruitment objectives and with research currently being performed on their data and samples, one topic has become the focus of ongoing debates: the return of research results to participants. (shrink)

In an era of unrivalled sequencing, computation and networking capability, international sharing of genomic samples and data is becoming a modus operandi for modern medical research. Researchers are collaborating to establish large collections with global scale. Having never before set foot outside the cell, the molecules that shape us are being digitized and launched across the globe. Protecting individual privacy interests in this information is a central challenge of the genomic research era. This article reviews international privacy norms governing human (...) genomic biobanks and databases. It will not directly consider biobanks established for other health-related purposes, such as screening or therapy. A genomic biobank is “a hybrid infrastructure,” an organized collection of human biological material combined with associated health information: physical measurements, outcome data in medical records, and epidemiological information, as well as genomic data derived from the samples. (shrink)

In this paper, we outline the policy implications of mobile health research conducted at the international level. We describe the manner in which such research may have an international dimension and argue that it is not likely to be excluded from conventionally applicable international regulatory tools. We suggest that closer policy attention is needed for this rapidly proliferating approach to health research.

The second of two commentaries on “Respecting Donors to Biobank Research,” from the January‐February 2013 issue.

Machine learning is an increasingly significant part of modern healthcare, transforming the way clinical decisions are made and health resources are managed. These developme...

The article “Ethical Responsibilities for Companies that Process Personal Data” (McCoy et al. 2023) provides a principled and pragmatic ethical framework for companies collecting, sharing, and usin...

Islamic religious educations; Islamic ethics; conduct of life.

Islamic sects; Islam; doctrines; Islamic philosophy.

Educational theory; knowledge; sufism, an analytical treatise.

Islamic education; Islamic ethics; security education; culture conflict; influences; families; Saudi Arabia; intellectual life; 20th century.

Hādī ilá al-ḥaqq, Yaḥyá ibn al-Ḥusayn, 859-910; view on Islamic philosophy; Islam; doctrines.

On Islamic teachings, written by an army officer and educationist from Pakistan.

ʻAyyānī, Yaḥyá ibn Ḥumaydān, ca. 12th century; Muslim scholars; Yemen; views on Islamic philosophy.