91Èȱ¬

Downloaded from

Ìý

THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.Ìý BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE 91Èȱ¬ CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

Ìý

Ìý

INSIDE HEALTH – Programme 4.

Ìý

TX:Ìý 29.01.19Ìý 2100–2130

Ìý

PRESENTER:Ìý MARK PORTER

Ìý

PRODUCER:Ìý ERIKA WRIGHT

Ìý

Ìý

Porter

Hello.Ìý Coming up in the next half hour.Ìý DNA analysis on the NHS – I will be exploring the implications of the surprise announcement that it’s going to offer gene sequencing to anyone prepared to pay for it.

Ìý

And joggers’ maladies – if they are playing havoc with your New Year’s resolution to get fit, then our resident athlete Margaret McCartney feels your pain.

Ìý

McCartney

First when I started running, I would get stitches all the time, it’s so sore.Ìý And then I developed shin splints – pain in the front of your shins after running like one or two kilometres.Ìý And now I’ve got planta fasciitis, so there’s pain in my heel.

Ìý

Porter

Oh, common.

Ìý

McCartney

And the problem is that I keep getting this advise to stop running, you look in running magazines and things, it says oh you must rest.Ìý And what I would like to know is what is the actual evidence for this, what is the evidence for rest making these kind of injuries better?

Ìý

Porter

Questions.Ìý Questions.Ìý But first, in-vitro fertilisation and a warning from the Human Fertilisation and Embryology Authority that fertility clinics are promoting expensive, unproven add-ons to women or couples who might be better sticking with the cheaper standard IVF package.Ìý And the HFEA’s announcement has come not a moment too soon for Carl Heneghan, Professor of Evidence Based medicine at the University of Oxford, who first raised the issue nearly two years ago.

Ìý

Heneghan

Well IVF has been around for quite some time and standard IVF, used to be an NHS type delivered entity and then there was a shift into it being a private delivery in terms of many women were contacting us and saying we’re going to these private clinics and we’ve been offered all sorts of different extra treatments, if you like.Ìý And that specific is the word add-on.Ìý And one of the issues about these add-ons is people were saying some of them are incredibly expensive.Ìý And so, for instance, an egg freezing package could go up to £8,000.Ìý We heard of a woman being offered pre-implantation genetic screening – three and a half thousand pound.Ìý And the basic question we ask is where’s the evidence for these?Ìý If you’re going to add-on and it makes a difference it’s really important to know the answer to that.

Ìý

Porter

And what did you find?

Ìý

Heneghan

Well, we did two things actually, the first thins is, we said well what are clinics offering.Ìý And so, we looked at all the websites that exist for all of these clinics and there are 74 different fertility websites and they made a significant number of claims, about 276 claims of benefit relating to 41 different interventions.Ìý However, we found on the website a complete dearth of evidence, there was no references, there was no trials, there was no systematic reviews at all, really, of note.Ìý So, we went and looked at the evidence ourselves and we distilled them down to 38 different interventions of which 27 of them we classified as the particular term called an add-on.Ìý And out of them 27 we found the majority had no evidence of benefit for producing a live birth.Ìý And we found only five systematic reviews for five different interventions where you could make some claim of benefit.Ìý However, the problem is all of them had flaws in their methods and how they’d been done undermined them results.Ìý So, at the end of the day we came to a conclusion that, actually, there’s very little evidence to suggest any of these treatments work.

Ìý

Harbottle

There are a number of add-ons that clinics will offer.Ìý And the number of these add-ons are based on some clinical evidence, others are based on no clinical evidence whatsoever.

Ìý

Porter

Stephen Harbottle is Consultant Embryologist at Cambridge IVF which treats both NHS and private patients.

Ìý

Harbottle

One example of a very common add-on is an incubated system called an embryoscope, where embryos are cultured within an incubator that contains a microscope that collates time-lapse photography over the six-day period that the embryos are growing inside of the incubator.Ìý Embryos develop through time and show some traits that are transient and disappear but those traits indicate the embryo is poor quality.Ìý With standard IVF what we need to do is take the dish out of the incubator, walk across the lab, put it down on a microscope, look at what we see in the dish, put that dish back into the incubator and close it again, within about three minutes, otherwise we change the environment in which the embryos are growing, the temperature drops, the Ph changes and it becomes stressful for the embryos.Ìý So, we have a very quick look and put them back in the incubator.Ìý With the embryoscope we see everything those embryos do over a six-day period, warts and all.Ìý So, it gives us a lot more information on which we can actually select the best embryos for transfer.Ìý It’s now common practice in the UK and internationally to offer patients access to embryoscope treatment and there are a number of studies out there that demonstrate that embryoscope treatment gives you an advantage, it gives you an increase in the percentage chance of falling pregnant.Ìý And that is quoted at somewhere between five and 15%.Ìý So, that’s one very common example of a treatment which is available as an add-on.

Ìý

Porter

So, that’s a good add-on, that you can understand that a couple might want to pay for, it increases their chances.

Ìý

Harbottle

There’s nothing wrong with add-ons where they do exactly that.Ìý And I think embryoscope is probably the best example because if you look to the Scottish government, the Scottish government’s view on embryoscope is such that yes, we agree that it makes a difference and they’ve put embryoscopes into every clinic in Scotland.Ìý So, if you have NHS treatment in Scotland you get embryoscope as standard.Ìý

Ìý

There are other add-on treatments out there that are based on less conclusive evidence or potentially no conclusive evidence whatsoever.Ìý And one example of that is immunotherapy.Ìý So, immunotherapy is very common in some clinics in the UK which promises to make sure that your embryo will match to your body and implantation will not be prevented by an immune response.Ìý Immunotherapy is extremely expensive and the evidence supporting it is very, very limited indeed.Ìý So, the HFE have taken a view that treatments such as immunotherapy should not be offered to patients because the evidence doesn’t back them up.Ìý If you look at the HFE website they’ve introduced a traffic light system, so red, amber, green.Ìý Red are those treatments that the HFE does not recommend because there’s no evidence base, amber are those treatments that the HFE will consider, based on the fact there is some evidence, and green are those that are perfectly acceptable.

Ìý

Heneghan

At the time we did our work there was no coding on the HFEA website.Ìý However, the HFEA’s move to an evidence-based approach has been a significant step forward.Ìý And red is basically there’s no evidence for this.Ìý Amber is, there’s a bit of evidence but uncertainty and green, we think there’s more than two clinical trials that can be used to inform this evidence.Ìý And there are no greens, which is concerning and a bit of a mockery about evidence based practice in IVF, it means it’s completely lacking.Ìý The good news though is, people are getting their act together and there are – starting to see trials emerging.

Ìý

Porter

What do we mean by lack of evidence in this particular situation?Ìý Might it mean that trials have been done but they don’t really show that these add-ons are helpful or has the research simply not been done?Ìý Because many of these are quite new techniques aren’t there?

Ìý

Heneghan

Correct.Ìý So, there are many where the – what the HFEA would do is give it a red and say the research has simply not been done, you shouldn’t be having this outside of the context of research.Ìý However, there has been in this amber zone some evidence done but generally it’s either of poor quality, it’s too small, there are particular features missing in the design, like lack of blinding or it doesn’t have the outcome of interest, which is a life birth.

Ìý

Porter

Looking at add-ons that are coded red, could it be that some of them – the research has been done, limited research has been done, and they might actually be harmful?

Ìý

Heneghan

Yeah, that’s correct.Ìý We found a Cochrane Review of pre-implantation genetic screening, that concluded it actually lowered live birth rate, the opposite of what you’re trying to achieve.Ìý And that is exactly what happens is people go into this believing that actually there’s no equipoise, if you like, everything benefits.Ìý But you start from a position that some of these interventions will reduce your chance of having a baby.Ìý And so, pre-implantation genetic screening – PGS – has been shown, through randomised trials to do that and that has a red circle, if you like, on the HFEA website.Ìý

Ìý

Porter

And yet couples attending some IVF centres are still being offered this as a very expensive add-on and paying thousands of pounds to perhaps reduce their chances of conception.

Ìý

Heneghan

Well even worse than that, what they’ve said is that’s the old PGS, if you like, genetic implantation screening, there’s a version two now, which uses newer techniques, it’s innovative, more is better.Ìý So, they’re trying to replace a new technique and say the old one was bad, this is good, without the evidence in place.Ìý Yet people want to keep selling these as though it’s the next hope.Ìý But I think what happens in these situations is people end up in a very emotive position.Ìý And that’s where people become vulnerable and that’s where they can be over-sold interventions.Ìý It’s very clear in the absence of evidence people should not be charged for any of these interventions.

Ìý

Porter

What would you say then to a listener who’s going for IVF?

Ìý

Heneghan

You’re better off going for the basic package and keep going and saving your money for another cycle because the more cycles you have the more likely it is it’ll work and that’s the thing that makes a difference as opposed to putting some of these exorbitant costs into your one or two hopes, if you like.

Ìý

Harbottle

I am aware of situations where people will pay a huge amount of money, and I’m talking about tens of thousands of pounds for treatment cycles, which at the outset look like they’re going to cost £5,000 or something, which is – I would describe – an average cost for IVF treatment in the UK but once they add the add-ons on it more than doubles the cost of the treatment.Ìý And people are sold these add-ons that they will make a difference but the clinics themselves don’t have the evidence base to back that up.

Ìý

Porter

You can understand the couple, you know, when you’re faced with this – it’s an expensive thing, you want it to work, you can’t do an infinite number of times, so you want to get the best out of each cycle – now if somebody says, this might help, well we’ll go for it, if they can afford it.

Ìý

Harbottle

Absolutely.Ìý But you can look at it the other way – we have to be very mindful that provision of IVF treatment in the UK is now predominantly in the private sector.Ìý Private sector providers have an obligation to shareholders to return them a profit.Ìý I work within the NHS and our ethos here is we’re committed to making as many babies as we can, not as much money as we can.Ìý Just because you can offer something doesn’t mean that you should.Ìý And if you look at the pregnancy rates, the clinical pregnancy rate per embryo transferred, which is the only meaningful statistic that the HFEA ask clinics to publish, you will not see a significant difference between the NHS clinics and the private sector clinics.

Ìý

Porter

Stephen Harbottle and Carl Heneghan. ÌýAnd there is a link to the HFEA traffic light system for IVF add-ons on the Inside Health page of the Radio 4 website.

Ìý

We are four weeks into 2019, just about the time when those well-meant New Year’s resolutions are starting to bite, particularly if yours was to get fit. ÌýMinor injuries are common in runners and joggers, particularly in novices whose bodies may not be used to the pounding. Plantar fasciitis – which causes pain under the heel and is bit like tennis elbow of the foot – is one I often see. ÌýTime for some fresh air…

Ìý

Well I’ve left the studio and I’ve come out to Regents Park and we’re going to be talking about running because at this time of year lots of people are taking up running and here’s Margaret McCartney who is something of an accomplished runner, Margaret.

Ìý

McCartney

Well I’m not sure, I’m not very fast but I’ve just done my five k.

Ìý

Porter

And how long did that take you?

Ìý

McCartney

Just about half an hour.Ìý It’s not a race, Mark.

Ìý

Porter

You’re not a new runner, are you…

Ìý

McCartney

No, no.

Ìý

Porter

…so you’ve been – in fact you ran five kilometres every day in December…

Ìý

McCartney

Yeah, so there’s a slightly mad December challenge called Marcothon and it’s very popular in Glasgow and throughout the world where you run five kilometres every day in December, admittedly fairly pointlessly but I do enjoy it.

Ìý

Porter

Now, what we want to look at are some of the problems facing new runners because lots of people listening will be taking up running for the first time, through park runs or couch to five k or whatever.Ìý So, what sort of problems did you experience?

Ìý

McCartney

Oh loads, loads of problems and I think this is why so many people give up and certainly I almost gave up several times.Ìý So, first when I started running, I would get stitches all the time, within about three minutes of running I’d have this crampy pain in my side and think oh god I have to stop, it’s so sore.Ìý So, that was the first thing I had.Ìý And then that seemed to get a bit better and then I developed shin splints, you know pain in the front of your shins after running, like one or two kilometres.Ìý That almost stopped me again, it was so sore every time I went.Ìý And now I’ve got planta fasciitis, this pain in my heel…

Ìý

Porter

Oh, common.

Ìý

McCartney

A common problem for lots of people but especially for runners.Ìý And the problem is that I keep getting this advise to stop running, you look in running magazines and things, it says oh you must rest.Ìý What I would like to know, is what is the actual evidence for this, what is the evidence for rest making these kinds of injuries better?

Ìý

Porter

Well Margaret, let’s find out.Ìý But first, a race back to the studio.

Ìý

McCartney

Yeah, and I’m going to win.

Ìý

Made it back before Mark and I’m only slightly out of breath.Ìý So, I’m just going to get started before Mark gets here.Ìý So, I’ve got on the line Roger Kerry, who’s an Associate Professor of Physiotherapy from the University of Nottingham.

Ìý

Roger, I want to talk to you about my heels, more specifically planta fasciitis.

Ìý

Kerry

I’ve got personal insight into this as well because I suffered for quite some months with it as well and the advice is to have some judicious rest initially but high-quality evidence certainly doesn’t support rest as a curative intervention.Ìý The problem with planta fasciitis is actually when you’re moving and doing things it feels okay, it’s afterwards and the day after that it’s worse.Ìý So, the monitoring of it has to be sort of over that period, you have to do something and then check how it feels the day after.Ìý And basically, the rules are, if it’s worse the day after you have done too much…

Ìý

McCartney

There’s just an astonishing amount of treatments on offer for it, from anti-inflammatory tablets to heel cups to Botox injections and yet the evidence base for these just seems to be so small.

Ìý

Kerry

Yeah, there’s loads and loads of treatments on offer and the vast majority don’t pan out well in randomised control trials.Ìý So, basically, if you go up onto your toes, so you lift your heels off the floor and just stand on your toes, that as a simple exercise, you’re working the muscles that feed into the planta fascia in your foot and that’s having some physiological effect on that fascia.Ìý Now what’s been shown that is if you progressively expose your tolerance to that very activity – going up on your toes, holding it and then lowering it down fairly slowly, first of all on both feet and progressing to one foot – as a protocolised intervention that’s got evidence to support it.Ìý There is some evidence looking at something called shockwave therapy but there’s less data on that.Ìý But of all the other interventions that seems to be one that can help as well but it’s not very accessible, it’s fairly expensive and as far as we know the effect size as seen in trials aren’t that great, you might as well just get on with doing some gradual exposure to movement and exercise in that very specific way.

Ìý

McCartney

As you know Roger, I did do my five kilometres run every day in December but I think most training professionals would probably disagree with that as a method of training.

Ìý

Kerry

So, running five k every day, it’s a nice idea but variation is often recommended as a way to both improve performance and reduce injury risk, even in conditioned athletes.Ìý Generally, you want to vary your running, you want to do some on the road, some off-road, different distances.Ìý That will give your body chance to adapt, certain muscle groups rest, certain muscle groups while you’re still doing something.Ìý So, variety is the spice of life.

Ìý

Porter

Professor Roger Kerry talking to Margaret last week.Ìý And the reason she beat me back to the studio was that I stopped for a coffee and cake – obviously.

Ìý

Well Margaret’s on the line from Glasgow.Ìý Margaret, I know you and Roger had a long chat, what did he say about your stitch?

Ìý

McCartney

Well, exercise related transient abdominal pain, to give it its Sunday title, there’s loads of theories about what causes it.Ìý I don’t think anyone really knows for absolute sure.Ìý But Roger thought that it’s most probably related to the diversion of blood away from the gut to the muscles when people start exercising.Ìý It goes away after you start and your body gets used to it but not a reason to give up your New Year’s resolutions.Ìý

Ìý

Porter

But for some people there are associations with meals and things, so if you notice it, it’s worth making a few changes but really, we don’t know what we’re up against.

Ìý

McCartney

Yeah, I mean there’s been a couple of pretty small trials looking at when people eat in relation to getting stitches and generally speaking it seems to be that avoiding food and drink for a couple of hours beforehand seems to help some people but there’s lots of uncertainties about the trial data.

Ìý

Porter

And your troublesome shin splints?

Ìý

McCartney

Again, not a reason to give it up.Ìý But again, there’s lots of theories about why this might be.Ìý Roger thinks that probably it’s being caused by the muscle growing faster than the sheath that the muscle is held inside and gradually the sheath catches up its growth and expansion and improvement with the muscle, so you no longer get that tension pain which is presumed to be the cause of it.Ìý But I don’t think anyone really quite knows for sure.Ìý But these things should get better, not a reason to give it up.

Ìý

Porter

So, Margaret, a month after you’ve done your five k every day for the whole of December, are you in good state now – the heels, shins…

Ìý

McCartney

Glowing.

Ìý

Porter

…stitch, everything okay?

Ìý

McCartney

Glowing – glowing with health.Ìý I am trying to mix it up a bit now.Ìý Great cycle from Glasgow up to Drymen in Loch Lomondshire at the weekend. So, I am trying to mix it up a bit.Ìý But I love my running so much.

Ìý

Porter

Thank you, Margaret.Ìý And, as ever, there are more details on Margaret’s blog which you can access through the Inside Health page of the Radio 4 website. ÌýAnd where you can also subscribe to our weekly podcast. ÌýAnd please do subscribe – the more the merrier.

Ìý

Now, to an announcement that has raised a few eyebrows. ÌýThe NHS is to offer DNA analysis to anyone prepared to pay for it. ÌýThe service will be provided by Genomics England – a company wholly owned by the NHS that was set up to deliver the 100,000 genomes project to improve the care of people with rare diseases and cancer.

Ìý

This new initiative will be the first time the service has been offered to healthy people, and the results will be available to researchers.

Ìý

Ewan Birney is Director of the European Molecular Biology Laboratory and Bioinformatics Institute. ÌýEwan, first of all, do we know what the test will entail?

Ìý

Birney

So, we don’t know at the moment because I know that Genomics England wants to have a good and deep consultation with their colleagues in the NHS about the practicalities of how one would do the test and the practicalities of how people could potentially use the test.Ìý What actually happens is that blood or saliva, which has lots of cells from the inside of your mouth, is taken, DNA is extracted from it and then you get effectively a book of three billion letters long.Ìý That book is your own book that came from your first sperm and egg and it’s your genome and in that book, there are lots of sort of curiosities about your ancestry and history but there’s also things that maybe relevant to your health.

Ìý

Porter

Because people will be familiar with the idea of DNA sequencing, you know there are adverts on television telling you whether you have Viking heritage, for instance, which is interesting.Ìý But also, there’s thing where it can tell you whether you’re at risk of certain diseases and that’s why, I imagine, a lot of people are going to be going for this – to find out whether am I going to get dementia, am I going to get cancer, am I going to get heart attack.Ìý Are we in a position to tell them that?

Ìý

Birney

So, this is where we need more research because it’s very clear that the genome does change the risk of people having these different diseases.Ìý What is far less clear is how we can use that information effectively inside of a healthcare system.Ìý So, a great example is a Type 2 diabetes, it has quite a strong genetic component but the advice that you’d give to nearly any patient, regardless of their genome is to exercise more and eat less.Ìý So, is having the genome information, either for the patient or for the clinician, actually useful.Ìý Now there are other cases where I think it’s going to be easier.Ìý So, one of them might be heart attacks where we do have an intervention – statins – that we can bring forward in time to when you might give it.Ìý But again, there are lots of big open questions about how we use this information, how patients react and also how it’s practically implemented inside of a healthcare system.

Ìý

Porter

And of course, whatever intervention we use, whether it be lifestyle or a drug, it’s not changing that predisposition, it’s not changing your genes.

Ìý

Birney

No, it’s definitely not.Ìý So, the genome, except for some very curious corner cases, do not change over your lifetime and that’s a very useful aspect to some of these things where we can estimate people’s risk far earlier in life.

Ìý

Porter

So, using diabetes as an example, if I was to be tested and it was to show me that I was much more likely to get it because of something in my genes, a. that doesn’t mean I definitely can get it and b. it still gives me time to make changes in my lifestyle that will stop me getting it.

Ìý

Birney

Absolutely.Ìý And an interesting question is – if I tell you that you’re at much higher risk, are you more likely to take my advice or not?

Ìý

Porter

Well, do we know that?

Ìý

Birney

I think the best research here has been done by some of my colleagues in Finland and they do have evidence that when you explain to patients their risks, they take lifestyle changes more effectively in that context.Ìý They’re Finnish, they’re not British, they do it their own way, but there is evidence that genomic information can change behaviours.

Ìý

Porter

What about the other way?Ìý So, you tell me by looking at my DNA that I’m less likely than an average person to have a heart attack or perhaps get lung cancer if I smoke – could that have a deleterious effect?

Ìý

Birney

It could do.Ìý I don’t think we can answer these things in the abstract, we have to do this with real life people and with well designed studies and trials of how you use this information.

Ìý

Porter

And genetic information is not black and white in that way in risk, so you’d be foolish to be based solely on what your genes were telling you.

Ìý

Birney

True.Ìý I would say there are some cases where it’s more black and white, for example, adverse drug reactions where there are some genetic lesions which really mean that you’re a false metaboliser of a particular drug or that you will have a very high chance of an adverse drug reaction.Ìý These are rarer situations but probably each one of us has perhaps one or two such things to watch out for in the genome.Ìý So, there are some cases where it’s more black and white but for these big broad diseases, common diseases, like Type 2 diabetes and heart attacks, it’s a real mixture of nature and nurture.

Ìý

Porter

Looking at the public’s perception of genes, do you think we get it as a nation?

Ìý

Birney

I think there’s a complicated conversation here because DNA is actually in common parlance, there’s a phrase, you know, it’s in my DNA meaning it’s an unchangeable part of my fabric.Ìý And yet, in fact, many of these things you can change.Ìý So, DNA is not your destiny, it’s not that your DNA book tells you how you’re going to die or when you’re going to die.Ìý There’s lots of decisions we make as individuals that changes our outcome.Ìý So, having a kind of balanced conversation where DNA is informative and useful but it’s not some kind of modern astrology is the right balance, it’s quite a complicated conversation to have.

Ìý

Porter

Ewan Birney. ÌýÌýAnd Margaret McCartney has been listening to that.Ìý Margaret, how did you feel when you heard the news?

Ìý

McCartney

I have to say when I heard the announcement, I thought oh my word, this is something quite extraordinary.Ìý Normally, if you’re volunteering to take part in research you don’t pay to do so, that’s a kind of golden rule and in fact my antennae for kind of slightly unusual behaviour would certainly be firing if I was asked to pay to take part in research.Ìý So, that, first of all, is quite an unusual thing and I think it sets up really quite a consumerist relationship here.Ìý Most of the time people take part in research with the knowledge that they may well not benefit themselves but society, who comes after them, will benefit.Ìý This is quite a different type of relationship.

Ìý

Porter

But Margaret, to be fair, to the idea, I think people might see it the other way round – they’re paying to find out, in otherwise healthy people, they’re paying to find out what’s in their DNA and as a by-product of that it’s being used in research.Ìý Are you more comfortable that way around?

Ìý

McCartney

Well not particularly.Ìý Considering how many people we’re going to expect to have something that’s going to be flagged up with their genome that perhaps wasn’t anticipated or expected going by family history alone.Ìý So, there’s been case studies, case series done in America looking at healthy adults having their whole gene sequences analysed and between one and five per cent of them had some kind of pathological gene and in one series almost a quarter of people had some potentially serious genetic carriage which may have an impact depending on who they marry or have children with later on.Ìý So, there’s lots and lots of information that I think we haven’t necessarily anticipated but will have to be dealt with somehow and where will that be dealt with?Ìý It’s going to come back to the NHS.Ìý And in a research study normally you make provision for all the unanticipated bits of information you might get and how these patients should be followed up.Ìý And that would require an enormous resource to do this and to do it well.Ìý And I don’t think we have anywhere near enough information about how that’s going to be done in this particular endeavour.

Ìý

Porter

If they were to ring you up, Margaret, and say look we’d like to analyse your DNA, you don’t have to pay anything, would you have it done?

Ìý

McCartney

Well it depends why.Ìý I mean there’s nothing I’m particularly I’m worried about just now, I think if I had a rare disease or something similar then perhaps.Ìý But if I was healthy and well and just wondering, just being curious I think I would have to think very carefully about what all the unintended consequences of that might be.

Ìý

Porter

So, if it was to show that you were at increased risk, for instance, because of your genes, of Type 2 diabetes, is that not a good thing to know that in that you’d think well I’ll double my running efforts, for instance?

Ìý

McCartney

Well, where’s the evidence that knowing this will actually prevent me from developing Type 2 diabetes? ÌýYou know, there’s only so much about your genes that will tell you about what’s going to happen to you.Ìý And I’m a worrying, I’m someone that gets worried and anxious about stuff, I’m not sure it would help me.Ìý One of the problems is if people get negative results and they may believe that means they’re at no risk, that they won’t get a particular disease or disorder but in actual fact that’s not true, there’s lots of genes that we don’t yet recognise.Ìý And there is this paradoxical situation where disease occurs in a population and the population that the gene test decide they’re low risk may actually hold lots of people who eventually get that disease just because there’s more people in that group.Ìý It’s actually very difficult to make accurate predictions about who’s going to get what in terms of diseases like diabetes or Alzheimer’s on the basis of genetic tests.Ìý And I think we could read too much into them and start to give people inaccurate information that doesn’t necessarily help them and may think that there is nothing that can benefit them, for example, by stopping smoking or by cutting down their alcohol, if they’re drinking too much or not exercising, they may think they’ve nothing to gain by that when actually they do.

Ìý

Porter

Yes, it’s the extremes, isn’t it, so the people who are deemed at very low risk think well they don’t have to worry about anything and equally somebody else, who’s got some high risk genes, might think we’re all doomed.

Ìý

McCartney

Yeah, exactly, and I don’t think we’re even vaguely near being able to predict with a high degree of certainty for the vast majority of genetic disorders that are picked up.Ìý And that’s why it should be a research study, that’s why it should be done with an eye on the uncertainty and trying to reduce that uncertainty.Ìý But we have to be absolutely clear with patients that that’s what we’re doing and that’s why it’s being done in this particular way.Ìý And I really worry that the commercial transaction that seems to be part of this scheme, is going to change the nature of the relationship between the researchers and the participants.

Ìý

Porter

Thank you very much, Margaret.

Ìý

And next week – more genetics – we’ll be looking at the implications of a fascinating case currently going through the courts. ÌýIf it’s discovered that you carry genes that put your family’s health at risk, do you, or your doctors, have a duty to tell them? ÌýAnd, in our ongoing quest for the perfect eclectic mix, we also investigate an unusual cause for low carb diets, as well as comparing the risks of flying to those of being admitted to hospital. ÌýSomething for everyone.

Ìý

ENDS