New_Scientist_3_08_2019

14 | New Scientist | 3 August 2019

THREE of the biggest home

DNA testing companies have

been the subject of complaints

to the UK’s data watchdog,

figures released under freedom

of information rules show.

Since January last year, the

Information Commissioner’s

Office (ICO) received a total of 16

complaints about AncestryDNA,

23andMe and MyHeritage. The

cases seem to have been relatively

low level, but several necessitated

action by the firms involved and

required the ICO to raise concerns

and advise on compliance with

data protection rules.

Direct-to-consumer DNA

testing companies are growing in

popularity, with 4.7 million people

in the UK estimated to have used a

home DNA testing kit. Members

of the UK parliament are probing

what safeguards should be put in

place to protect people who take

such tests, some of which can tell

people their risk of developing

conditions such as type 2 diabetes.

Influential scientific groups

have already told MPs that steps

need to be taken to avoid negative

outcomes, such as any anxiety

caused when people receive their

results. The groups also said that

new laws may be required to make

sure genetic data isn’t sold on to

third parties like insurance firms.

Of the complaints made to the

ICO, 10 were about AncestryDNA,

two about 23andMe and four

about MyHeritage – the first two

firms are based in the US and the

last in Israel. They covered issues

such as security, the use and

disclosure of data and the right

to prevent the processing of data.

The details of the cases

weren’t disclosed in the freedom

of information release to

New Scientist. But they probably

involve isolated incidents of

human error, rather than failures

of procedures. That might be

sending an email to the wrong

person, or the loss or accidental

destruction of small volumes

of personal data, for example.

Since new European Union

privacy legislation took effect

in May last year, known as the

General Data Protection

Regulation (GDPR), biometric

data has been designated as

special category data, meaning it

has additional legal protections.

GDPR probably raised

awareness that you can complain

about the use of genetic data,

says Debbie Kennett at University

College London.

It is likely that many more

complaints are being made

directly to companies, but those

figures aren’t published. The

number of complaints seems

low given the number of people

estimated to have taken a DNA

test in the UK, says Kennett.

“It’s quite reassuring that the

ICO is actually working as it should

do, and there is this channel where

people can submit complaints

and have them investigated,”

she says.  ❚

4.7million

People in the UK have used

home DNA testing kits

Genetic privacy

Adam Vaughan

ERIC BARADAT/AFP/GETTY IMAGES

News

DNA home testing worries

UK’s data watchdog receives complaints about DNA testing firms

Primates

New monkey species

already threatened

by deforestation

IT IS time to welcome another

species to the primate family tree –

but the Munduruku marmoset

may already be under threat from

deforestation in the Amazon.

Rodrigo Costa Araújo at the

National Institute of Amazonian

Research, Brazil, discovered the

species in 2015. It has a distinctive

white tail that sets it apart from

most other Amazonian marmosets.

“I thought, ‘Oh my God, they are

different, they are really, really

different’, ” says Araújo.

To entice monkeys out of

the trees, he and his colleagues

played an MP3 recording of other

marmoset calls over a speaker while

trekking through the rainforest.

During subsequent expeditions

over the next three years, Araújo

and his colleagues found that the

patch of forest where they first

found the white-tailed marmosets

is home to clusters of the monkeys.

In order to prove that the

monkeys represent a new species,

the researchers killed five individuals

for analysis under a permit provided

by the Chico Mendes Institute

for Biodiversity Conservation, the

administrative arm of the Brazilian

Ministry of the Environment. The

monkeys’ markings were the first

thing that set them apart, but the

team also examined their DNA.

Their genomes were all closely

related but distinct from those

of other known marmosets in

the Amazon. This evidence,

combined with data showing

their unique distribution across

a 55,000-square-kilometre area,

helped to prove this was a new

species. It has been named Mico

munduruku (PeerJ, doi.org/c8vd).

The Amazon currently faces high

levels of deforestation and urban

development. Araújo warns that

such practices threaten the

monkeys’ habitat. Mining and

farming activity may also be a

problem for the species.  ❚

Chris Baraniuk

The Munduruku

marmoset has

a distinctive

white tail

STEPHEN NASH

23andMe is one of

a number of home

DNA testing services

What does the future hold for healthcare?

Find out at New Scientist Live this October

live.newscientist.com/future-health