GenomEthics Survey. Ethics and your genome.

[Kwenda]

The Wellcome Trust Sanger Institute has launched an online survey to collect the views of "ordinary people" about how personal genomic information should be used in medical research and by agencies such as the National Health Service.

The aim of the GenomEthics Survey is to collect public attitudes about how genetic information from projects like the UK government's plan to sequence the genomes of 100,000 citizens and other genome-driven medical initiatives may be used and shared with the patients who provide samples.

"Our survey helps people to learn about what is happening and gives them a tool to think through how they want to make this work for them," Anna Middleton, an ethics researcher at the Wellcome Trust Sanger Institute who is leading the survey project, said in a statement today.

"It also gives them a voice that will have a direct impact on policy. If people use health services already armed with some background information about genetics, together with some informed opinions, then they will be at a massive advantage," Middleton added.

The survey will be used to inform policies supporting the kind of genome-based medical research efforts that the UK plans to pursue more of, such as the £100 million ($152.8 million) 100,000 Genomes initiative that Prime Minister David Cameron unveiled in December.

The online survey uses brief video clips presenting scenarios that potential research participants may encounter if they participate in a study involving the use of their genetic information. After viewing the clips, respondents are asked questions about what should be done with incidental findings, pertinent findings, and raw data, what kinds of consent should be required for genomics research, and their views on the ethical duties of genomics researchers.

The questionnaire also dives a bit deeper, inquiring about what types of incidental findings might be more or less important, from those that are linked to life-threatening illnesses but which cannot be treated and those that can be treated, and about conditions that are serious but do not endanger their lives.

While the survey is open to healthcare workers, researchers, and policy-makers, Middleton said the institute "wants more views from Jo Public, from young people, from old folks, from mums and dads."

The Sanger Institute said it plans to conclude the survey and release the detailed findings later this year.

CLICK ON survey.sanger.ac.uk/genomet...

Dick

[Cllcanada Top Poster CURE Hero]

Impressive survey technically, it works extremely well on an iPad and the short videos explained things well...nice way of doing it... I hope everyone will participate.

Thanks Dick!

[Hidden in reply to Cllcanada]

Hi There, I'm Anna Middleton and I designed the GenomeEthics survey. I'm really pleased you liked the survey, it took about a year to design and pilot in full, so I'm very chuffed it seems to be working as it should. We only have 3 months left to recruit people and so there is a bit of a mad rush to try and reach as many people as possible. If you can think of any new ways of getting the survey 'out there' I'd be delighted to hear them!

[AussieNeil Partner Administrator]

And in related news, the Supreme Court of the USA is currently hearing arguments over the validity of patents on human genes:

blogs.nature.com/news/2013/...

"The case has been working its way through the courts since 2009, when the American Civil Liberties Union and the Public Patent Foundation filed a complaint against Myriad Genetics, a medical diagnostics company based in Salt Lake City, Utah, that holds patents on two genes related to breast and other cancers. The groups filed the complaint on behalf of patients, physicians and researchers who argued that the patents, which claimed isolated BRCA1 and BRCA2 genes, cover a product of nature and are therefore invalid."

[Oleboyredw-uk]

Very interesting, i wish all surveys were this well thought out and implemented.

Rob

[Hidden in reply to Oleboyredw-uk]

Thanks Rob, its really great to get feedback on whether a survey is any good or not. I spent several months working with the film maker to get the films just right in the survey. Do you have any ideas of how to reach more people? Any help gratefully received.

Anna Middleton (maker of Genomethics survey)

[HAIRBEAR_UK Founder Admin]

Thanks Dick, very interesting it was a pleasant experience over morning coffee. Will circulate.

Nick

[Hidden in reply to HAIRBEAR_UK]

thanks so much Nick for circulating the survey. We need as many people as possible to participate and the results will have a direct impact on what happens to people participating in genome studies in the future (many of which will be arriving in the NHS this year). I really appreciate your enthusiasm.

Regards, Anna Middleton (from the Genomethics survey)

[jangreen]

Hi its good to have opinons from people at the coal face.

[Hidden]

Just in case anyone is interested - Dame Sally Davies, Chief Medial Officer for the UK government has said she will be using the results of the Genomethics survey in her decision making about genomics in the NHS. So, we need as many people as possilbe to share their views as the Dame will be listening!

survey.sanger.ac.uk/genomet...

[sparkler]

What an interesting and thought-provoking survey...... Beautiful format too.

I appreciated being offered the chance to input my opinions.

sparkler x