Non-respect of right to cancel subscription - Nebula Genomics

[thierrywalt]

There is this american company that sequences your genome.

They charge very little for the sequencing (giving you the raw data), but tie it to mandatory very expensive subscription service (custom reports, analysis, tools).

Already this is very weird but well... First you pay for the sequencing. It then takes weeks to complete.

Once sequencing is done, they bill for the subscription (lifetime subscription, one-off payment).

My problem is that I do not know if I'll be satisfied with the subscription, in fact I don't even need it. I guess I could block my card before they charge for the subscription, but I guess they will then withhold the sequenced data.

I asked them if I had a period to retract the subscription if I don't like it, and they say that the 14 day period to get a refund starts when paying for the kit. That means the retraction period will be over long before I get access to the service to be able to evaluate it. They say they are respecting UK and European law.

Is there anything I can do about it?

I want to purchase the service knowing I will be able to get a refund if I don't like the subscription. 

[dx100uk]

why not use the ancestry.co.uk service or another one in the uk then?

p.s..if you simply stop cpa access via your bank there is little a foreign company can do about it.

 

[thierrywalt]

Because it is not the same thing. ancestry and 23andme and similar services do not do deep genome sequencing. They only sequence 0,02% of your dna, while Nebula sequences 100%. I do not use another UK service because there is no other commercial service available, they are all extremely expensive custom research and medicine services.

Can you clarify what is cpa access? I google it but nothing. I can easily block my credit card, but if I do that, as I explained, I am afraid they will not give me access to the finished data, meaning I just lost money (remember I would already have paid for the first service though).

[Kyosanto]

Have taken a quick look at their website.

 

All of their packages state fairly clearly that membership is required and needs to be paid for separately (for example $99 cost + $200 membership). This isn't an optional subscription.

 

If you changed your mind just cancel within 14 days, but apart from unbundling their fees, it's not that misleading is it?

[honeybee13]

Hi.

Perhaps you could tell us briefly why you want to see your genome sequence please?

That could help us to advise you. 

HB

[thierrywalt]

@honeybee13

I suspect I will find interesting information about my health and it will explain some of the diseases I have. Not enough argument to have my genome sequenced via the NHS though. Also, at the speed that biomedical research is going, everyday new diseases and new predispositions to diseases are being found, and having my genome sequenced is something that I will be checking every now and then and it will accompany me forever.

I truly believe that at the speed things are going, in a few years every human being will have their genome sequenced from birth, and we will tackle diseases much better. I mean, 20 years ago it costed 100 million dollar to sequence a human genome. Today it costs 100 dollars.

@Kyosanto

Thank you for your participation but I never believed or said that subscription was optional, or that it was misleading.

The fact is that they are bundling two products, one which is only accessible weeks after the other, but they tie the retraction period of the second to the purchase date of the first. That means you effectively lose your right of retraction and might get stuck with something that is not what you expected.

That is against the UK law on products and services.

Matters are even worse due to the fact that they do not provide access to a demo of the service provided in the subscription period (even with fake data) so you don't even know what to expect.

Could be awesome, could be rubbish. Doesn't matter because you already paid.

[honeybee13]

Maybe there's another website you could consider?

HB

[dx100uk]

well however you pay.

if you got what you wanted and stopped, there is little they can do to you in the UK.

 

dx

[Kyosanto]

I get the impression that OP did not get what they wanted. They only want A (a service), but the company only offers A+B (A service + a product), and OP has no idea whether B is worth paying what the company demands for it.

It doesn't seem that the company is interested of ever selling A without B, to anyone.

The company is based in the USA and does not provide either A or B until months after you've already paid for both. It's not extremely well rated on trustpilot (3.7/5) and many reviewers complain the service is slow and not better than cheaper alternatives.

The company claims that it does 100% of your genome and other companies only do 0.02% but is this really relevant? If humans share 75% of our DNA with bananas, then maybe we don't actually need to decode the banana bits. This line is just my two bit thoughts 

It is unclear whether OP already paid for A, or A+B, or nothing, and whether they've already sent their blood/saliva/soul to the USA to be decoded.

It it does not seem that there is an easy way for OP to get just what they wanted, whether in the right or not, so others' advice to consider other websites is perhaps the best here.

 

... and this was me trying to decode this thread!