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| Your DNA's in the post | Your DNA's in the post |
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| Fancy being told you have a higher-than-average chance of getting prostate cancer but are at low risk of glaucoma? Now for about £500 you can have your genetic make-up analysed. Rob Liddle swabbed his cheek and sent off for a scan. | Fancy being told you have a higher-than-average chance of getting prostate cancer but are at low risk of glaucoma? Now for about £500 you can have your genetic make-up analysed. Rob Liddle swabbed his cheek and sent off for a scan. |
| An e-mail pops into my basket to say the results of my genetic scan are ready. I have a few minutes free - shall I take a peep now or wait until I can devote the time to digest the results properly? | An e-mail pops into my basket to say the results of my genetic scan are ready. I have a few minutes free - shall I take a peep now or wait until I can devote the time to digest the results properly? |
| Curiosity gets the better of me and I log on to the Decodeme website to view my password-protected "gene profile". | Curiosity gets the better of me and I log on to the Decodeme website to view my password-protected "gene profile". |
| This is quite exciting - could what I find out in the next few minutes alter the course of my life? I'm curious by nature, but that doesn't extend to wanting to know when the Grim Reaper is going to come a-knocking. It is a new form of diagnosis - before any symptoms manifest themselves - but really what everybody should do is smoke less, eat less and do more exercise Professor Steve Jones | This is quite exciting - could what I find out in the next few minutes alter the course of my life? I'm curious by nature, but that doesn't extend to wanting to know when the Grim Reaper is going to come a-knocking. It is a new form of diagnosis - before any symptoms manifest themselves - but really what everybody should do is smoke less, eat less and do more exercise Professor Steve Jones |
| Up pops a list of grisly conditions - most of which are familiar to me, indeed some of them lurk in my family history. | Up pops a list of grisly conditions - most of which are familiar to me, indeed some of them lurk in my family history. |
| And it's the ones that have touched my life that I am drawn to first. I click on Heart Attack, bypass the warm-up "introduction" to the condition, and head straight for my own "risk summary". | And it's the ones that have touched my life that I am drawn to first. I click on Heart Attack, bypass the warm-up "introduction" to the condition, and head straight for my own "risk summary". |
| I'm told: "According to the selected literature, the relative genetic risk calculated from your genotype for males of European ancestry is 0.90. | I'm told: "According to the selected literature, the relative genetic risk calculated from your genotype for males of European ancestry is 0.90. |
| "This corresponds to a 44.2% lifetime risk of developing heart attack, which is 10% less than for males of European ancestry in general." | "This corresponds to a 44.2% lifetime risk of developing heart attack, which is 10% less than for males of European ancestry in general." |
| Fated to be fat? | Fated to be fat? |
| So far so good, I suppose, but that's still a high risk and I'm not celebrating with a full English breakfast yet. | So far so good, I suppose, but that's still a high risk and I'm not celebrating with a full English breakfast yet. |
| I scan the list of 25 traits again and settle on Crohn's disease. Here I'm told the research indicates that I have a lifetime risk 1.42 times the average. Not so good. But for Diabetes, types 1 and 2, better news. Swab, seal, send, then sweat for a few weeks | I scan the list of 25 traits again and settle on Crohn's disease. Here I'm told the research indicates that I have a lifetime risk 1.42 times the average. Not so good. But for Diabetes, types 1 and 2, better news. Swab, seal, send, then sweat for a few weeks |
| Next I plump for Obesity - surely a banker. These genes make me look fat, right? No, a lower-than-average risk. I can't use that as an excuse for my fuller figure. | Next I plump for Obesity - surely a banker. These genes make me look fat, right? No, a lower-than-average risk. I can't use that as an excuse for my fuller figure. |
| A number of personal genomics firms, including Iceland-based Decodeme and 23andme and Navigenics, in the US, are now directly selling tests to the public that assess genetic risks of suffering from certain conditions. | A number of personal genomics firms, including Iceland-based Decodeme and 23andme and Navigenics, in the US, are now directly selling tests to the public that assess genetic risks of suffering from certain conditions. |
| Some also provide information about your ancestral origins. | Some also provide information about your ancestral origins. |
| After receiving a sample taken from the inside of your cheek, Decodeme analyses up to one million DNA markers, annotates them and puts them in the context of disease risk, providing you with a personal profile. | After receiving a sample taken from the inside of your cheek, Decodeme analyses up to one million DNA markers, annotates them and puts them in the context of disease risk, providing you with a personal profile. |
| 'Do more exercise' | 'Do more exercise' |
| One reason the tests have proved controversial is that they can measure only the genes that studies have linked to certain conditions - not the many that have yet to be discovered. | One reason the tests have proved controversial is that they can measure only the genes that studies have linked to certain conditions - not the many that have yet to be discovered. |
| Decodeme says it is continually adding the results of new research to its database, improving the accuracy of the existing risk summaries and extending the list of traits for which you can assess yourself. | Decodeme says it is continually adding the results of new research to its database, improving the accuracy of the existing risk summaries and extending the list of traits for which you can assess yourself. |
| But there are other risk factors that could easily override these genetic indications, such as family history and lifestyle. My genetic risk of getting type 2 diabetes is rated as below average, but being overweight probably counts for more. | But there are other risk factors that could easily override these genetic indications, such as family history and lifestyle. My genetic risk of getting type 2 diabetes is rated as below average, but being overweight probably counts for more. |
| Steve Jones, author and professor of genetics at University College, London, believes that, in most cases, individual genes cannot say much about a person's risk. For him, potential customers would be better off following the advice of the health lobby. | Steve Jones, author and professor of genetics at University College, London, believes that, in most cases, individual genes cannot say much about a person's risk. For him, potential customers would be better off following the advice of the health lobby. |
| See how the deCODEme site gives its users a genetic snapshotIn pictures | See how the deCODEme site gives its users a genetic snapshotIn pictures |
| "It is a new form of diagnosis - before any symptoms manifest themselves - but really what everybody should do is smoke less, eat less and do more exercise," he says. | "It is a new form of diagnosis - before any symptoms manifest themselves - but really what everybody should do is smoke less, eat less and do more exercise," he says. |
| The Decodeme website has a section on risk factors and prevention for each of the conditions featured, which I later peruse. | The Decodeme website has a section on risk factors and prevention for each of the conditions featured, which I later peruse. |
| From this I learn that the prevalence for Crohn's is highest during the second and third decades of life - but that it can crop up in the over-70s. I'm 42, so may have dodged that bullet. | From this I learn that the prevalence for Crohn's is highest during the second and third decades of life - but that it can crop up in the over-70s. I'm 42, so may have dodged that bullet. |
| And if I still have questions, I can message Decodeme's team, who may then refer me to a genetic counsellor. | And if I still have questions, I can message Decodeme's team, who may then refer me to a genetic counsellor. |
| But for some critics, discovering your risk of developing a serious condition from a web page rather than a doctor presents a serious problem - even if the scans are unlikely to throw up any catastrophic results. | But for some critics, discovering your risk of developing a serious condition from a web page rather than a doctor presents a serious problem - even if the scans are unlikely to throw up any catastrophic results. |
| The authorities in some states in the US have recently warned testing companies that they should not continue to solicit business from residents unless the process is being sanctioned by a licensed physician. | The authorities in some states in the US have recently warned testing companies that they should not continue to solicit business from residents unless the process is being sanctioned by a licensed physician. |
| 'Reduced autonomy' | 'Reduced autonomy' |
| Daniel Sokol, a lecturer in medical ethics at the University of London, says the absence of the direct doctor-patient relationship does create a problem. | Daniel Sokol, a lecturer in medical ethics at the University of London, says the absence of the direct doctor-patient relationship does create a problem. |
| "The results could allow people to make changes for the better to their lifestyle," says Dr Sokol. | "The results could allow people to make changes for the better to their lifestyle," says Dr Sokol. |
| "However, if they misinterpret them - the scans could do more harm than good and could actually reduce people's autonomy if they interpret the results incorrectly or exaggerate their implications." | "However, if they misinterpret them - the scans could do more harm than good and could actually reduce people's autonomy if they interpret the results incorrectly or exaggerate their implications." |
| But Kari Stefansson, chief executive of Decodeme, says it should be a matter of personal choice how people treat their own data. | But Kari Stefansson, chief executive of Decodeme, says it should be a matter of personal choice how people treat their own data. |
| "The people who feel that they want to go over the results with a doctor should go to a doctor," he says. | "The people who feel that they want to go over the results with a doctor should go to a doctor," he says. |
| "When I got mine, I went into the office and closed the door. I wanted to be alone. BEING ROB LIDDLE Alcohol flush reaction - noNicotine dependence - normal Baldness - likely before age 40Can taste bitter flavours - yes | "When I got mine, I went into the office and closed the door. I wanted to be alone. BEING ROB LIDDLE Alcohol flush reaction - noNicotine dependence - normal Baldness - likely before age 40Can taste bitter flavours - yes |
| "It should be your decision - we are not ramming it down anyone's throat. How you use it depends on who you are, but you are entitled to make the choice of getting the information or not getting it. | "It should be your decision - we are not ramming it down anyone's throat. How you use it depends on who you are, but you are entitled to make the choice of getting the information or not getting it. |
| "But you can get so much out of it - it could be extremely beneficial to know that you are at a higher risk." | "But you can get so much out of it - it could be extremely beneficial to know that you are at a higher risk." |
| Dr Stefansson admits that the cost of the test at $985 probably puts it out of reach for most people, but he predicts a future in which accessing such personal genetic information will be commonplace - with the tests possibly costing a 10th of what they do now in five years' time. | Dr Stefansson admits that the cost of the test at $985 probably puts it out of reach for most people, but he predicts a future in which accessing such personal genetic information will be commonplace - with the tests possibly costing a 10th of what they do now in five years' time. |
| We go through my results together. I appear to have a slightly increased chance of suffering macular degeneration (an eye problem), coeliac disease and Crohn's, but there is nothing in my risk summary that indicates that I need to take further medical advice immediately. | We go through my results together. I appear to have a slightly increased chance of suffering macular degeneration (an eye problem), coeliac disease and Crohn's, but there is nothing in my risk summary that indicates that I need to take further medical advice immediately. |
| "I'm afraid to tell you that you are just an average guy," jokes Dr Stefansson. | "I'm afraid to tell you that you are just an average guy," jokes Dr Stefansson. |
| Perhaps this news is the hardest of all to take. | Perhaps this news is the hardest of all to take. |
| Add your comments on this story, using the form below. | Add your comments on this story, using the form below. |
| Now that you have this information in your possession will you be disclosing it to your future insurers? Not to disclose what you know to be the case will render any future claim invalid.Nick Rumble, Huddersfield England | Now that you have this information in your possession will you be disclosing it to your future insurers? Not to disclose what you know to be the case will render any future claim invalid.Nick Rumble, Huddersfield England |
| I think this is a brilliant idea. Sure, right now this isn't quite as useful as it could be, but give it a few years and we should be able to analyse and examine our own problems in our own time. Families shy away all too often from revealing poor health history with they're children, so being able to find out for yourself seems like something everyone should do. I'm only concerned about the security of this; I don't trust corporations, especially not with data as crucial to being me as this.Pip Manning-Rees, Swansea, Wales | I think this is a brilliant idea. Sure, right now this isn't quite as useful as it could be, but give it a few years and we should be able to analyse and examine our own problems in our own time. Families shy away all too often from revealing poor health history with they're children, so being able to find out for yourself seems like something everyone should do. I'm only concerned about the security of this; I don't trust corporations, especially not with data as crucial to being me as this.Pip Manning-Rees, Swansea, Wales |
| When this technology comes to be relied on in the future, it could be used by insurance companies to increase their premiums - but this would be based upon faulty assumptions, which are based on probabilities that can't be even assumed, as they could just be 100% guess work due to the fact that environmental and lifestyle aren't considered, and even if they were its still a matter of guess work.Darren Thomas, Wembley, London | When this technology comes to be relied on in the future, it could be used by insurance companies to increase their premiums - but this would be based upon faulty assumptions, which are based on probabilities that can't be even assumed, as they could just be 100% guess work due to the fact that environmental and lifestyle aren't considered, and even if they were its still a matter of guess work.Darren Thomas, Wembley, London |
| A DNA evaluation surely is a good thing - people should know and take charge of their well-being as the NHS isn't performing very well here. However, should DNA results show up some health issues people should be advised to consult a doctor before taking any measures. While I have to admit that I sometimes don't quite trust doctors to tell me the whole story, if I get my DNA tested, I could take the results to a doctor and hope that, together, we can put the results into perspective and balance nature with nurture.Martina Watson, East Horsley, Surrey | A DNA evaluation surely is a good thing - people should know and take charge of their well-being as the NHS isn't performing very well here. However, should DNA results show up some health issues people should be advised to consult a doctor before taking any measures. While I have to admit that I sometimes don't quite trust doctors to tell me the whole story, if I get my DNA tested, I could take the results to a doctor and hope that, together, we can put the results into perspective and balance nature with nurture.Martina Watson, East Horsley, Surrey |
| Although I can see the obvious benefits of such a service, it sends shivers down my spine to think of a company having so much information on people which they could then sell on. Or lose on a tube train. Matt, UK | Although I can see the obvious benefits of such a service, it sends shivers down my spine to think of a company having so much information on people which they could then sell on. Or lose on a tube train. Matt, UK |
| This article nicely demonstrates why these genetic tests are a bad idea: your average member of the public cannot accurately interpret the results. Rob talks about "dodging the bullet" of his apparently concerning increased risk of developing Crohn's when in reality the risk is miniscule. Crohn's disease is a rare condition with a prevalence in the population of at most 1 per 2,000 people, so with a risk of 1.42 times the average your risk has only increase to 1.42 per 2000 or roughly 1 per 1400 people: still pretty strong odds against ever developing the condition. Merely by being a smoker or a woman would alone raise your risk by more than 1.42 times, but in these groups it is still rare: perhaps that puts it into perspective? Finally, doctors already have enough people with irritable bowel syndrome insisting that what they actually have is Crohn's disease, this kind of thing won't help.Catriona, Edinburgh | This article nicely demonstrates why these genetic tests are a bad idea: your average member of the public cannot accurately interpret the results. Rob talks about "dodging the bullet" of his apparently concerning increased risk of developing Crohn's when in reality the risk is miniscule. Crohn's disease is a rare condition with a prevalence in the population of at most 1 per 2,000 people, so with a risk of 1.42 times the average your risk has only increase to 1.42 per 2000 or roughly 1 per 1400 people: still pretty strong odds against ever developing the condition. Merely by being a smoker or a woman would alone raise your risk by more than 1.42 times, but in these groups it is still rare: perhaps that puts it into perspective? Finally, doctors already have enough people with irritable bowel syndrome insisting that what they actually have is Crohn's disease, this kind of thing won't help.Catriona, Edinburgh |
| A total waste of money. I could understand being tested for certain diseases but only the ones where they can be cured. What is the point of ruining your life over something you can do nothing about.stuart fisk, colchester | A total waste of money. I could understand being tested for certain diseases but only the ones where they can be cured. What is the point of ruining your life over something you can do nothing about.stuart fisk, colchester |
| All these tests do is generate a risk score or profile, not a certainty. As such they play on the public's fears rather than provide useful information. As a geneticist I object to this - without proper comprehension of the scientific significance of findings, and the limitations of the tests, the results produced are little better than looking at your own family history of disease and illness and merely serve to pave the way for confusion and worry.Steve, London | All these tests do is generate a risk score or profile, not a certainty. As such they play on the public's fears rather than provide useful information. As a geneticist I object to this - without proper comprehension of the scientific significance of findings, and the limitations of the tests, the results produced are little better than looking at your own family history of disease and illness and merely serve to pave the way for confusion and worry.Steve, London |
| In the end, whether it's medical DNA or ancestral DNA, when DNA decodes us, Dr. Stefanson is right, when he jokes that DNA will find very complex medical issues and ancestry in some of us, and just average history and future in the rest of us. When I used DNA to trace my ancestors, beginning in 1999, I began with the DNA of the 80- and 90-year-olds in my family. That way, I had a genetic baseline. I then factored in lifestyle, diet, residency and other details about our generation as I did our own DNA. Geneticists are forging ahead doing tons of research. We need to do the same amount of research by interviewing the elders in our families and researching how our ancestors lived and where they lived.Pearl Duncan, New York, NY, USA | In the end, whether it's medical DNA or ancestral DNA, when DNA decodes us, Dr. Stefanson is right, when he jokes that DNA will find very complex medical issues and ancestry in some of us, and just average history and future in the rest of us. When I used DNA to trace my ancestors, beginning in 1999, I began with the DNA of the 80- and 90-year-olds in my family. That way, I had a genetic baseline. I then factored in lifestyle, diet, residency and other details about our generation as I did our own DNA. Geneticists are forging ahead doing tons of research. We need to do the same amount of research by interviewing the elders in our families and researching how our ancestors lived and where they lived.Pearl Duncan, New York, NY, USA |
| Why do the words "expensive insurance" and "misdiagnosis" and "lawyers" leap into my mind? Do you suppose it is something to do with my genetics?Nigel Macarthur, London, England | Why do the words "expensive insurance" and "misdiagnosis" and "lawyers" leap into my mind? Do you suppose it is something to do with my genetics?Nigel Macarthur, London, England |
| I've done the same sort of thing with 23andMe who are one of the companies the State of California tried to stop by issuing a cease and desist notice (they continue to offer the service). Whilst I appreciate the concerns of doctors, at the end of the day its my genetic data and it may be something I don't want to be recorded in my medical records. So, like Rob, I did not involve my doctor. That said, I felt 23andMe did a great job of telling you again and again that the data should not be used as a diagnosis and for each illness makes it very clear how reliable the research is and often only indicates if you have an increased or decreased risk. Finally it also shows you for things like heart disease how much is genetic and how much is due to environmental factors.Nick, Leeds | I've done the same sort of thing with 23andMe who are one of the companies the State of California tried to stop by issuing a cease and desist notice (they continue to offer the service). Whilst I appreciate the concerns of doctors, at the end of the day its my genetic data and it may be something I don't want to be recorded in my medical records. So, like Rob, I did not involve my doctor. That said, I felt 23andMe did a great job of telling you again and again that the data should not be used as a diagnosis and for each illness makes it very clear how reliable the research is and often only indicates if you have an increased or decreased risk. Finally it also shows you for things like heart disease how much is genetic and how much is due to environmental factors.Nick, Leeds |
| I am adopted as my father died in a road accident before I was born and my mother was run down by a car when I was a few months old. Because the fact I was adopted and both my parents died aged 24 and 23, many companies will not provide me with life cover and some banks will not give me a mortgage despite of me telling them that my parents were victims of road accidents. I am happy to do this sort of test, providing they bring the cost down. Once I know if I am prone to any diseases, then companies should accept me as I am.HW, UK | I am adopted as my father died in a road accident before I was born and my mother was run down by a car when I was a few months old. Because the fact I was adopted and both my parents died aged 24 and 23, many companies will not provide me with life cover and some banks will not give me a mortgage despite of me telling them that my parents were victims of road accidents. I am happy to do this sort of test, providing they bring the cost down. Once I know if I am prone to any diseases, then companies should accept me as I am.HW, UK |