J.De Vrieset al., “Ethical Issues in Human Genomics Research in Developing Countries,”BMC Medical Ethics12, no. 5 (2011), available at <https://doi.org/10.1186/1472-6939-12-5> (last visited April 26, 2019).
A.B.Popejoy and S.M.Fullerton, “Genomics Is Failing on Diversity,”Nature538, no. 7624 (2016): 161-164.
4.
J.Kinkorova, “Biobanks in the Era of Personalized Medicine: Objectives, Challenges and Innovation,”EPMA Journal7, no. 1 (2015): 4.
5.
M.Capocasaet al., “Samples and Data Accessibility in Research Biobanks: An Explorative Survey,”PeerJ4 (2016): e1613.
6.
C.E.Grahamet al., “Current Trends in Biobanking for Rare Diseases: A Review,”Dovepress2 (2014): 49-61.
7.
International Rare Diseases Research Consortium (2018), available at <http://www.irdirc.org> (last visited April 26, 2019).
8.
See De Vries et al., supra note 1; Kinkorova, supra note 4; Capocasa et al., supra note 5.
9.
See Popejoy and Fullerton, supra note 3.
10.
M.H.Zawatiet al., “Barriers and Opportunities in Consent and Access Procedures in Low- and Middle-Income Country Biobanks: Meeting Notes from the BCNet Training and General Assembly,”Biopreservation & Biobanking16, no. 3 (2018): 171-178.
11.
J.W.Goebelet al., “Legal and Ethical Consequences of International Biobanking from a National Perspective: The German BMB-EU Coop. Project,”European Journal of Human Genetics18, no. 5 (2010): 522-525.
“Letter From the Editor,”MIT Technology Review120, no. 1 (2017): 2
14.
The Broad Institute and Dana-Farber Cancer Institute, “Metastatic Breast Cancer Project,”available at <https://www.mbcproject.org/about> (last visited April 26, 2019).
15.
M.Sleeboom, “The Harvard Case of Xiu Xiping: Exploitation of the People, Scientific Advance, or Genetic Theft?”New Genetics & Society24, no. 1 (2005): 7-78.
16.
J.Kayeet al., “Including All Voices in International Data-sharing Governance,”Human Genomics12, no. 13 (2018): 1-9; M.A. Rothstein et al., “Comparative Approaches to Biobanks and Privacy,” Journal of Law, Medicine & Ethics 44, no. 1 (2016): 167-172.
17.
K.H.Joneset al., “The Other Side of the Coin: Harm Due to the Non-use of Health-related Data,”International Journal of Medical Informatics97 (2017): 43-51.
Regulation on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (Data Protection Directive), General Data Protection Regulation, Regulation EU 2016/679.
E.S.Doveet al., “Ethics Review for International Data-Intensive Research,”Science351, no. 6280 (2016): 1399-1400.
29.
Council for International Organizations of Medical Sciences, “International Ethical Guidelines for Health-related Research Involving Humans” (2017), available at <https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMSEthicalGuidelines.pdf> (last visited April 26, 2019); J.J.M. VanDelden and R. Van der Graf, “Revised CIOMS International Ethical Guidelines for Health-related Research Involving Humans,” Journal of the American Medical Association 317, no. 2 (2017): 135-136.
M.V.McConnell and E.A.Ashley, “Mobile Health Research–App-Based Trials and Informed Consent,”New England Journal of Medicine376, no. 9 (2017): 861-863.
34.
B.M.Knopperset al., “Recontacting Pediatric Research Participants for Consent When They Reach the Age of Majority,”IRB: Ethics and Human Research36, no. 6 (2016): 1-9.