Oxford genetic ethicist chronicles breach of her own genetic information

c d z
(Credit: Kevin Dooley/Flickr)
This article or excerpt is included in the GLP’s daily curated selection of ideologically diverse news, opinion and analysis of biotechnology innovation.

Last week, online photo printer Shutterfly sent a mass email to all its female customers in the U.S., congratulating them on the recent births of their new children. Twenty four hours later, the company apologized for the mistake, but not before freaking out a lot of customers about the reliability of the organization’s information management.

In a similar, but more sensitive, snafu, the UK’s Personal Genome Project spammed a list of recent volunteers, including genetic ethicist Paula Boddington. Despite her extensive knowledge about the field, she made some of the same assumptions many people might:

I’d expressed an interest in taking part in this project which aims to sequence the genomes of hundreds of thousands of people and make these available, together with trait information, to researchers. There are clear potential worries about privacy here, as there is a potential to identify individuals from such a rich source of information. Nonetheless, I was excited to take part. After all, many of the people I know and love the most would not be alive today were it not for advances in medical science which have helped to treat diseases such as cancer and type 1 diabetes. In the past, many have risked life and limb for medical science. What was the potential of a little breach of privacy to worry about? Besides which, there has been considerable attention to ethics, privacy, and security around this project. There’s a whole ethics crew. Presumably they only hire the crème de la crème of data and IT experts. Surely these guys could be trusted to use our information wisely, and to do all they could to prevent irresponsible use?

And yet, they weren’t. Although no leak of actual genetic information was made, people’s names and identities were released. If the purpose of the project is anonymity, this was a big failure and violated the basic premises of ethical trust, as Boddington defines them:

There is a simple lesson to be learned from this – the fragility of trust. There are two basic strategies for ensuring ethical conduct of research: one, through robust regulations and practices which protect participants; two, through the trustworthiness of those managing research – that they have the competence and virtues necessary to handle the information entrusted to them, for the betterment of humanity whilst protecting the individual.

Then, unfortunately, she circles back saying that everyone who volunteered should have at least had the possibility of a security breach, but that the motivation to benefit humanity through participation would outweigh the privacy hesitation.

Regardless of whether participants could have a reasonable expectation of privacy or not, the endeavor has been seriously damaged by the email list issues. Boddington is regretful:

[The real problem is] that trust evaporated overnight with this idiotic breach of security. The entire point of this project depends upon something utterly crucial to the heart of it: the trust that those running it know how to manage data. The project is all about good data management. And they can’t even do that. A glitch in how the email list is managed can be sorted out in a minute or two. A breach of trust takes much, much longer.


Additional Resources:


Outbreak Daily Digest
Biotech Facts & Fallacies
Talking Biotech
Genetics Unzipped
sperm swim

Video: Sperm are ‘spinners not swimmers’—because they are lopsided

Research by fertility scientists in the UK and Mexico challenges the accepted view of how sperm “swim”, suggesting that it ...
mag insects image superjumbo v

Disaster interrupted: Which farming system better preserves insect populations: Organic or conventional?

A three-year run of fragmentary Armageddon-like studies had primed the journalism pumps and settled the media framing about the future ...
dead bee desolate city

Are we facing an ‘Insect Apocalypse’ caused by ‘intensive, industrial’ farming and agricultural chemicals? The media say yes; Science says ‘no’

The media call it the “Insect Apocalypse”. In the past three years, the phrase has become an accepted truth of ...
breastfeeding bed x facebook x

Infographic: We know breastfeeding helps children. Now we know it helps mothers too

When a woman becomes pregnant, her risk of type 2 diabetes increases for the rest of her life, perhaps because ...
biotechnology worker x

Can GMOs rescue threatened plants and crops?

Some scientists and ecologists argue that humans are in the midst of an "extinction crisis" — the sixth wave of ...
food globe x

Are GMOs necessary to feed the world?

Experts estimate that agricultural production needs to roughly double in the coming decades. How can that be achieved? ...
eating gmo corn on the cob x

Are GMOs safe?

In 2015, 15 scientists and activists issued a statement, "No Scientific consensus on GMO safety," in the journal Environmental Sciences ...
Screen Shot at PM

Charles Benbrook: Agricultural economist and consultant for the organic industry and anti-biotechnology advocacy groups

Independent scientists rip Benbrook's co-authored commentary in New England Journal calling for reassessment of dangers of all GMO crops and herbicides ...
Screen Shot at PM

ETC Group: ‘Extreme’ biotechnology critic campaigns against synthetic biology and other forms of ‘extreme genetic engineering’

The ETC Group is an international environmental non-governmental organization (NGO) based in Canada whose stated purpose is to monitor "the impact of emerging technologies and ...
Share via
News on human & agricultural genetics and biotechnology delivered to your inbox.
Optional. Mail on special occasions.
Send this to a friend