Genetic disease screening goes virtual

Jnetics are using postal saliva kits and Zoom calls to test and consult potential carriers


The charity which tests community members for severe Jewish genetic disorders has reacted to the lockdown by expanding its virtual screening programme.

Jnetics normally offers counselling and screenings for nine of the most common genetic disorders among Jews out of its Barnet clinic, in partnership with an NHS trust.

But with the clinic currently closed, Jnetics has extended its virtual screening option, previously available only to those outside the capital.

Since the lockdown, 33 virtual screenings have been completed through use of saliva kits and Zoom or phone conversations. “It’s an essential service at any time and we have responded to the constraints of the pandemic,” said Jnetics chief executive Katrina Sarig.

One-in-five people of Jewish descent is a carrier of at least one of the main Jewish genetic disorders, including cystic fibrosis and Tay Sachs disease.

Screening enables people to identify if they are at increased risk of passing on a severe genetic disorder. The charity’s counsellors help carriers understand how they can reduce the chances of having an affected child.

Through the remote programme, which starts with a consultation, those tested provide a saliva sample via the post which is then sent to a partner lab in America. Results are typically emailed to the genetic counsellor at London North West Healthcare University NHS Trust within ten weeks, who forwards them to the participant.

“In terms of the virtual sessions, we’re not delivering any news, we’re mainly listening and answering questions and signposting,” explained Anaar Sajoo, a genetic counsellor at Northwick Park Hospital. “We are just making sure people are happy to take the test in this way.”

Having worked in a hospital during the 2003 Sars outbreak, she knew it was “difficult” talking to patients when neither could see the other’s face behind a mask. “So Zoom has some positives.”

One participant, Dr Lauren Sandler, said the virtual screening had been “more convenient than going into hospital. It’s great they’re still running it during Covid because most NHS services that are similar were all stopped.”

The doctor — who works at Evelina London Children’s Hospital and is a member of South Hampstead United Synagogue — was “well aware of how Ashkenazi Jews are a lot more prone to genetic conditions. It’s important that we prevent more children from being born with these conditions unnecessarily.”

Dr Sanders, 28, added that the counselling had been “all in simple terms and made very clear”. She had wanted to undergo the test, which came back negative for all nine diseases, as it was “nice to know before having children”.

Ms Sarig pointed out that Jnetics’ services maybe even more relevant if the suggested post-lockdown baby boom materialises.

The charity had also planned to offer a free drop-in session at Oxford University, following well-supported events at other UK campuses. The event will now be done remotely, with testing kits being sent out to students this week. If it proves successful, Jnetics will roll out virtual testing for other universities.

More information about the screening service can be found here.

Correction: an earlier version of this article said that Ms Sajoo was principal genetic counsellor at Guy's and St Thomas's Hospital. This has been amended to her current role.

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