Dear Colleagues,

Welcome to the newest edition of the bi-monthly SHAPESnewsletter, providing you with opinions, reports, and academicarticles on ethical issues in genomics, AI and health data research.

This is also the last edition of the stand-alone SHAPES newsletter.From December onwards, we will be joining forces with rest of theCentre for Biomedical Ethics (CBmE) to publish a high-qualitynewsletter on ethical issues in health research. We will continue tocover the topics of genomics, big data and AI. The new mailer willstill reach you via email but through a new communicationsplatform. Your e-mail address will automatically be included but ifyou wish to unsubscribe, please click here.

Sincerely,The SHAPES Team

Events &Events & WebinarsWebinars

23-25 NOVEMBER

2-3 DECEMBER

Singapore Research Ethics Conference,National University ofSingapore

Singapore Healthcare AIDatathon and Expo 2021,National University ofSingapore

News & Opinion

Reports

UN official calls for moratorium on artificialintelligence tools that breach human rights,Washington Post

Picking Embryos With Best Health Odds SparksNew DNA Debate, Bloomberg

A new approach to the data-deletionconundrum, Standord University HAI

The first polygenic risk score baby, Center forGenetics and Society

Explaining medical AI is easier said thandone, STAT

Why should we care about social andbehavioural genomics? bioethics.net

Human genome editing and moral leadership:findings of the WHO Expert AdvisoryCommittee, Nuffield Council on Bioethics

Gathering Strength, Gathering Storms: The One Hundred Year Study on Artificial Intelligence(AI100) 2021 Study Panel Report, Stanford University

{click on the links to register}

The second report of the One Hundred Year Study on Artificial Intelligence assesses the progress andrisks of artificial intelligence, concluding that AI has made significant leaps in recent years and thatthere is increased urgency to understand its positive and negative societal impacts.

While much research on machine learning hasfocused on processes in the clinic, this articleconsiders the ethical implications of using machinelearning for population health and highlightsopportunities for machine learning, public andpopulation health to jointly promote health equity.

Academic Articles

"A cohort of pirate ships": Biomedical citizenscientists' attitudes toward ethical oversightby Trejo et al., Citizen Science: Theory andPractice

A call for better, not faster, research ethicscommittee reviews in the Covid-19 era byTamariz et al., Ethics & Human Research

As bottom-up biomedical citizen science projectsbeyond the purview of institutional review boardsbecome more prevalent, questions of an ‘ethics gap’and ethical oversight emerge. This article reports thepreferences of biomedical citizen scientists regardingdifferent mechanisms of ethical oversight.

Research ethics committees (RECs) are pressured tomove through reviews of Covid-19 clinical researchstudies quickly, yet without relaxing ethical standards.This commentary recommends steps that RECs cantake to ensure ethical review of research studies inresponse to this demand and in future infectiousdisease outbreaks.

Religious perspectives on precision medicinein Singapore by Toh et al., Asian BioethicsReview

This article presents the outcomes of a knowledgeexchange fora with religious authorities in Singaporeregarding data sharing for precision medicine.According to religious authorities, sharing precisionmedicine data with private industry requires a publicbenefit justification and robust data governance.

Germline genome modification throughnovel political, ethical, and social lenses byXafis et al., PLOS Genetics

Applying novel political, ethical and social lenses toaspects of Human Germline Genome Editing (HGGE) can uncover previously under-exploredconsiderations. This article explores four such lensesthat enrich the debate about the ethics regulation ofHGGE.

Germline genome editing: Moratorium, hardlaw, or an informed adaptive consensus? byKaan et al., PLOS Genetics

This article argues that an international moratoriumon HGGE and regulation through traditional legalmechanisms are unlikely to achieve their objectives.Engaging an international community of stakeholdersto develop an “informed adaptive consensus” canprovide an alternative approach that changes inresponse to new biomedical knowledge.

Digital bioethics: Introducing new methodsfor the study of bioethical issues bySchneider et al., Journal of Medical Ethics

This article demonstrates how novel methods in digitalsocial science research can be applied in the domainof bioethics. A new domain of digital bioethicsresearch can integrate with empirical bioethics andoffer ways to tackle complex emerging ethical issuesin science and technology.

Privacy and artificial intelligence: Challengesfor protecting health information in a newera by Murdoch, BMC Medical Ethics

As private entities increasingly own and control AItechnologies, these entities will play a great role inutilising and protecting patient health information, thusraising significant privacy issues. Regulation shouldemphasise patient agency and encouragesophisticated methods of data protection.

Machine learning and algorithmic fairness inpublic and population health by Mhasawadeet al., Nature Machine Intelligence