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Ethical Considerations in the Manufacture, Sale, and Distribution of Genome Editing Technologies

May 16, 2018

Authors, including our Jeremy Sugarman, offer a call to action, ‘Companies that develop and distribute tools for genome editing have a responsibility to construct and implement policies and procedures to protect the integrity of science, to educate their employees to make certain that all research conducted within the company adheres to the highest ethical standards’

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Ethical Considerations in the Manufacture, Sale, and Distribution of Genome Editing Technologies

Wednesday, May 16th, 2018

by Jeremy Sugarman MD MPH,MA, Supriya Shivakumar PhD, Martha Rook PhD, Jeanne F. Loring PhD, Christoph Rehmann-Sutter PhD, Jochen Taupitz PhD, Jutta Reinhard-Rupp PhD, Steven Hildemann MD PhD

New genome editing technologies are playing an increased role in an array of advanced research and development efforts in the life sciences. In tandem, there has been broad recognition of the need to address the ethical issues associated with the use of these genome editing tools. Although many uses of genome editing technologies do not raise novel ethical concerns, some have rightly attracted considerable attention, especially regarding the possibility of manipulating the human germline (Baltimore et al. 2015; Lanphier et al. 2015). Such concerns have prompted a substantial body of scholarship and high-profile efforts to address these ethics and policy matters (Bonas 2017; German Ethics Council 2016; La Barbera 2014; National Academies of Sciences, Engineering and Medicine, Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations 2017; National Akademie der Wissenschenschaften Leopoldina 2015; Ormond et al. 2017; Reich et al. 2015). While the outcomes of these deliberations offer useful high-level advice, there has been little discussion of the critical ethical issues involved with the practical processes of manufacture, sale and distribution of genome editing technology products that enable this research. Here, we describe these issues and practices being developed and implemented to address them.

Our discussion builds upon the recent experience of Merck KGaA, Darmstadt Germany, a multinational corporation that operates as MilliporeSigma and EMD Serono in the United States and Canada, which is actively involved in discovering, developing, producing, selling and using genome editing tools and technologies.To develop approaches to anticipate and manage the ethical issues emerging in its work the company consulted with its existing Bioethics Advisory Panel (MBAP) that includes an international panel of external experts in bioethics and senior corporate leaders.

… continue reading ‘Ethical Considerations in the Manufacture, Sale, and Distribution of Genome Editing Technologies’

Image By National Human Genome Research Institute (NHGRI) from Bethesda, MD, USA – CRISPR-Cas9 Editing of the Genome, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=52360100

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Bioethics.net

His College Knew of His Despair. His Parents Didn’t, Until It Was Too Late.

May 14, 2018

In the days after her son Graham hanged himself in his dormitory room at Hamilton College, Gina Burton went about settling his affairs in a blur of efficiency, her grief tinged with a nagging sense that something did not add up

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Facebook, Big Data, and the Trust of the Public

April 13, 2018

Facebook CEO Mark Zuckerburg recently appeared before members of the United States Congress to address his company’s involvement in the harvesting and improper distribution of approximately 87 million Facebook profiles —about 1 million of them British— to data collecting app Cambridge Analytica

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Facebook, Big Data, and the Trust of the Public

Friday, April 13th, 2018

In brief, Cambridge Analytica is a British political consulting firm, which uses online user data (like Facebook profiles), to construct profiles of subjects, which can then be used for what it calls ‘behavioural micro-targeting’; advertisements tailored to the recipient based on their internet activity. In 2016, Cambridge Analytica was contracted by Donald Trump’s presidential campaign, as well as the ‘Leave EU’ campaign prior to Britain’s referendum to leave the European Union.

The controversy involving Facebook concerned how Cambridge Analytica was able to acquire 87 million profiles, seemingly without user consent. According to Facebook’s policy, user data may be provided to third-parties, provided it is for academic use. Cambridge Analytica was able to acquire this data through Alexander Kogan, a psychologist at Cambridge University, whose app ‘thisismydigitallife’ gave him permission to access the profiles of about 320,000 Facebook profiles, and all of their friends’ profiles. Because this original use of the data was allegedly for academic purposes, Facebook allowed it to occur. And when it became clear that Cambridge Analytica had obtained this data illicitly, Facebook requested that Cambridge Analytica simply delete the data.

After news of the scandal broke, Zuckerburg issued a statement, in part saying that the policies which allowed for the misuse of data were “a breach of trust between Facebook and the people who share their data with us and expect us to protect it.” Facebook COO Sheryl Sandberg also called it “a major violation of people’s trust”.

… continue reading “Facebook, Big Data, and the Trust of the Public”

Image: Official White House Photo by Lawrence Jackson

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Practical Ethics Blog

The First Pedestrian Has Been Killed by a Self-Driving Car. Now What?

March 20, 2018

In Tempe, Arizona, an autonomous Uber struck and killed a woman crossing a street at night. The incident is likely to test the public’s tolerance of AVs on real-world roads

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AI Can Be Made Legally Accountable for Its Decisions

November 16, 2017

Computer scientists, cognitive scientists, and legal scholars say AI systems should be able to explain their decisions without revealing all their secrets

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Researcher Says Aaron Hernandez’s Brain Showed Signs Of Severe CTE

November 10, 2017

The Boston researcher who examined the brain of former football star Aaron Hernandez says it showed the most damage her team had seen in an athlete so young

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Are Mass Murderers Insane? Usually Not, Researchers Say

November 9, 2017

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For Some People, Opioids Can Actually Make Pain Worse

November 6, 2017

Scientists are learning how weaning off opioids like morphine or fentanyl can be even more complicated than they thought. The narcotic painkillers are essential to dull the excrutiating pain that can follow things like surgery or cancer. When taken for more than a month, the medications risk causing more harm than good in a variety of ways. Travis Rieder knows first hand

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Ethical Considerations in the Manufacture, Sale, and Distribution of Genome Editing Technologies

Ethical Considerations in the Manufacture, Sale, and Distribution of Genome Editing Technologies

His College Knew of His Despair. His Parents Didn’t, Until It Was Too Late.

His College Knew of His Despair. His Parents Didn’t, Until It Was Too Late.

Facebook, Big Data, and the Trust of the Public

Facebook, Big Data, and the Trust of the Public

The First Pedestrian Has Been Killed by a Self-Driving Car. Now What?

The First Pedestrian Has Been Killed by a Self-Driving Car. Now What?

AI Can Be Made Legally Accountable for Its Decisions

AI Can Be Made Legally Accountable for Its Decisions

Researcher Says Aaron Hernandez’s Brain Showed Signs Of Severe CTE

Researcher Says Aaron Hernandez’s Brain Showed Signs Of Severe CTE

Are Mass Murderers Insane? Usually Not, Researchers Say

Are Mass Murderers Insane? Usually Not, Researchers Say

For Some People, Opioids Can Actually Make Pain Worse

For Some People, Opioids Can Actually Make Pain Worse

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