Red Flags in the Dragons’ Den

It’s a well-known fact that watching certain films and TV shows with a scientist is no fun at all – in fact, it’s almost as bad as trying to watch ER with three medical student flatmates, as I did every week from 1995-1998. Rather than trying to competitively guess each diagnosis (and argue about it loudly enough to drown out the dialogue), however, the scientist’s problem is usually a lack of ability to prioritize narrative flow and dramatic tension over scientific accuracy, and to switch off other scientific thought processes.

CBC’s Dragons’ Den, in which entrepreneurs pitch ideas to potential investors, is usually (but not always) a life-sciences free, and therefore a safe, option. However, an old episode I watched for the first time on Wednesday proved to be an exception to the rule, and made me put on my “and another thing!” ranty-pants for at least 15 minutes. Poor Mr E Man…

The pitch in question is 7:33 long and can be found here (there’s no embed code, unfortunately). The company making the pitch extracts and stores DNA from humans and pets, either as a future medical and ancestry testing resource or to be embedded into jewellery or other mementos.

Moving in order of increasing seriousness of the problem, rather than chronologically, my first issue with the pitch is that, I’m sorry, storing DNA in a tube is NOT proprietary. (See section of video from 4:40 – 5:12). The design of a tube can obviously be proprietary, but I just can’t see any possible way in which storing DNA in said tube can be patented. The building I work in contains dozens of fridges and freezers, all crammed to the gills with thousands of tubes of DNA – big tubes, little tubes, colourless tubes, blue tubes, pink tubes, you name it. The same is true for every single lab I’ve ever set foot in. I extracted DNA and put it in a tube for storage during an undergraduate lab class. Hell, the elementary school students who come in every so often to tour our lab, learn about genomics, and extract DNA from kiwi fruit put that DNA in tubes, too. Sheesh!

So far, so ridiculous. However, the part that really made me mad is described from 2:38 –  3:50. This part of the business involves getting funeral home staff to swab cheek cells from every deceased person they prepare for cremation, and offer DNA extraction, storage, and/or insertion into jewellery to the bereaved – for a fee, of course. The fact that cremation destroys the genetic history and medical information [emphasis added] stored in the body’s DNA is apparently used as a persuasion tool when trying to make these sales.

This latter point raises a huge red flag for me – and not just because of the thought of bereaved people being marketed to in this way*. My job has recently involved a lot of reading and synthesis of the latest research and guidelines relating to the ethics of genome sequencing, and this part of the pitch set my “YOU SHOULD NOT BE ABLE TO DO THIS WITHOUT THE CONSENT OF THE DECEASED” warning lights ablaze. Who knows what the dead person’s opinions on this matter were?! You can’t just go taking their DNA and testing it for medically relevant information that could affect the entire family! Hell, I’m a geneticist by training who’s spent the last six years in the genomics field, and I’m still highly conflicted about direct-to-consumer genetic testing myself! GAAAAAH!

I’ve talked about this clip with several colleagues over the last few days, one of whom is a real expert in the ethics and consent aspect of genome sequencing, and they all agree with me, so this is not just my opinion.

The scientists did not get their deal, although largely because the company is too young and doesn’t have enough cash flow yet – the ethical aspect wasn’t mentioned at all. In fact, they were invited to come back in a year to pitch again when the company has matured a little. I’ll be watching, with my ranty-pants on standby – stay tuned!


*although I do understand that this happens a lot, with everything from the funeral home to the coffin or urn to the headstone to the flowers etc etc etc. Doesn’t mean I have to like it though.

About Cath@VWXYNot?

"one of the sillier science bloggers [...] I thought I should give a warning to the more staid members of the community." - Bob O'Hara, December 2010
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6 Responses to Red Flags in the Dragons’ Den

  1. chall says:

    Huh. It is a rather interesting conundrum in this day and age isn’t it? I wish I could say I’m surprised that the investors didn’t raise the ethical concerns – however, that’s really not that regulated in the TV show right now is it? Mainly about money and potential for the company in the future and “if people would buy it, it’s interesting”?.

    The “what rights do the deceased person have” and “what do they own” is very interesting and will imho be more important in the future. AFAIK, which is probably very depending on which country you’re in, the rights of (to?) the medical files of a deceased ‘disappears’ when the person is dead… (perhaps moved to the decendants?) but that is “previously done medical diagnosis”, not “doing things with DNA that is new information with implications to the living family members (and future ones)”. I don’t know who (which?) would be the protectors of this? University ethical boards? Governmental Health official boards?

    That said, I’ve had issues with all the DNA self tests and storage of information (yes, 23andme among other companies) for a long time (since 2000 when I took the classes in medical genetics/guideence/counselling). I really feel that there is a HUGE potential for harm to come by. Mainly because there are so many ways to misinterpret the data and for some other companies (read insurance companies especially) to create problems/issues. I mean, there are very few things we ‘know’ for sure about this DNA interpretation (it’s a little complex, wouldn’t you say?)

    (I guess one of my many pet peeves is that it seems like “as long as you don’t ‘know’ something is wrong it can be covered but if you find something out and try and prevent it from happening it’s not insurable”. Thereby creating the whole “it’s better not to know and walk around unknowing” – Ignorance is bliss scenario.)

    I’m going to avoid going on a rant of the “bereaved people getting targeted” since it’s such a complicated world. Every so often I would think that we should make it manadatory for everyone to have a “burial plan with details” for anyone over 18 years of age and that nothing can be done apart from that. Saves a lot of tears/conflict for the survivors who need to guess “what would they have wanted” and “what are they worth – nice casket for 3000 usd” etc….

  2. chall says:

    I win longest comment for this post 🙂 (sorry about that. It’s a very important question though!)

    • No need to apologise!

      “I don’t know who (which?) would be the protectors of this? University ethical boards? Governmental Health official boards?”

      That’s the big question… I have absolutely no idea. We have to jump through a HUGE number of hoops to get ethical approval for doing any genetic testing on people who’ve given full consent (and quite rightly – I’m not complaining about this!), but these guys pitching their company didn’t even say a single word about ethics or consent. I know 23 and Me have IRB approval for their research activities, but I don’t know exactly what would be required, and by which organisations, for DNA extraction, storage, and testing from deceased people whose DNA is taken in this way.

      You’re absolutely right that this kind of question will become more and more important, and IMO it’s up to the early entrants into the field to pave the way by being extremely vigilant about consent, ethics, and privacy issues.

      • chall says:

        well, it’s the main problem right now though isn’t it? that we don’t have “a specific place who is responsible for this” <- partly because it's global too…. but mainly (IMHO) that we outsource medical fields and the regulations/ethical considerations are getting downgraded since "they don't save lives as clearly as the other 'real' descisions".

        (Sorry, I see how cynical and bitter I am about this but I feel that the "ethical discussions and responsibilities" have been moved into closed rooms where people who might have financial gain are helping deciding….)

        As for the IRB and 23andme, it's a apparently not as easy according to a friend of mine who work with IRB approvals and have looked over that company and more. There are some murky waters and potential pitfalls with "who owns the data" afterwards etc (insurance companies etc).

        It's always hard to legislate and be vigilant about things like this since half of it is "what _could_ happen in the future since we don't have the technology right now" but that shouldn't stop us from discussing it and the potental….

  3. What interests me about this is how it relates to organ donation… my understanding is that the wishes of the next of kin can trump the wishes of the deceased. So even if you fill out your organ donor card, your NOK can deny the donation (which is why it’s always recommended that you discuss organ donation with your relatives).

    For this, then… would the NOK’s wishes for the dispensation of their deceased relative’s DNA be accepted? I really don’t know, since this is kind of the other way around from the organ donation scenario (presumably the deceased did not contemplate or agree to the use of his/her DNA for this purpose).

    As for the storage piece – if they have some proprietary chemical (like the stuff Biomatrica sells), or a proprietary tube/storage system (like DNA Ident’s C-POD), then ok. If it’s just the act of putting DNA in a tube… well, as you point out, there’s ample prior art to indicate that’s just not proprietary at all.

    • That’s an interesting comparison. If this were directly analogous to organ donation, then as the law stands right now a) it would be opt-in only (i.e. the default assumption would be that the deceased did NOT wish to have their DNA analysed); b) NOK would be able to override the deceased relative’s wish to have their DNA analysed; c) NOK would NOT be able to override the deceased relative’s wish NOT to have their DNA analysed.

      [NB for organ donation, points a) and b) may change in the future. Should change, IMO – I think it should be an opt-out system and that NOK should not be able to override the person’s decision].

      Given that DNA analysis (potentially) benefits the NOK, rather than an anonymous organ recipient, the conflict of interest situation would be very different though.

      I went to the 23 and Me site to try and find out if you can even submit a deceased relative’s DNA for testing, and couldn’t find an answer – maybe it’s just never come up for them yet, or maybe they just assume no-one would do that… or maybe you can’t see that section unless you create an account / make a purchase.

      This is all very complicated and should be decided by ethics and health policy experts in consultation with the public, NOT by reality TV show participants!

      As for the whole IP issue – my impression from the video was that the guy was very vague / cagey when asked about which parts of the business are proprietary. Deliberately so, in order to hide something that is proprietary but not yet patented? Or just to hide the fact that he didn’t know, or that there IS nothing proprietary? Only he knows…

      I know that if the Dragons do make a deal, they still run it through due diligence before it’s finalised – some of the follow-up episodes have mentioned deals that collapsed at this stage. Oh, to be a fly on the wall!

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