Opinion: Genomics’ Ethical Gray Areas Are Harming the Developing World; Undark, February 24, 2022

DYNA ROCHMYANINGSIH, Undark; Opinion: Genomics’ Ethical Gray Areas Are Harming the Developing World

"Various ethics guidelines on health-related research — including UNESCO’s International Declaration on Human Genetic Data and international ethical guidelines published by the Council for International Organizations of Medical Sciences, or CIOMS, in collaboration with the World Health Organization — advise researchers to seek approval from an ethics committee in the host country. Such reviews are critical, bioethicists say, because cultural and social considerations of research ethics might vary between countries. In low-resource countries especially, ethics reviews are essential to protect the interests of participants and ensure that data are used in ways that benefit local communities.

Nowhere in Larena and Jakobsson’s paper, or in any of the subsequent publications based on the Philippines study, does the Uppsala team mention obtaining such an ethics approval in the Philippines — and Philippines officials say they never granted the team such an approval."

How to Stop the Abuse of Location Data; The New York Times, October 16, 2019

Jeff Glueck, The New York Times; How to Stop the Abuse of Location Data

There are no formal rules for what is ethical — or even legal — in the location data business. That needs to change.

"Companies should have to maintain data with adequate security protections, including encryption at rest and in transit. Employees at companies that collect data on millions of consumers should undergo privacy and ethics training. Companies should require clients and other people who use the data to promise that they will not use the tech and data for unethical or discriminatory practices — and should penalize those that act unethically. Regulation should force companies to create ethics committees where management and employees must discuss their privacy and ethical data use policies regularly."