Why I Don’t Want to Know My Genome Sequence

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Even after writing ten editions of a human genetics textbook, I don’t want to know my genome sequence. Yet.

Famous folk have been writing about their genome sequences for a few years now. But when I received two such reports at once last week – about genetics researcher Ron Crystal, MD, and a hypothetical (I think) story about President Obama, I knew it was time to take action.

Or, in my case, inaction.

After writing ten editions of a human genetics textbook and lots of articles, you’d think I’d be first in line to get my genome sequenced. But I prefer ignorance.

The quest to know ourselves by our DNA sequences began in the late 1980s, with the conception of the human genome project, and reached a milestone with the actual genome sequencing.

Revisiting the Genome Race

I still have my dog-eared copies of the journals unveiling the first draft of “the” human genome, from February 2001. The Science report hailed from the Celera Genomics/Craig Venter camp, with 5 individuals contributing to that composite genome, including CV himself, who has since gone on to creating life. The Nature report represented the International Human Genome Sequencing Consortium, which used genome pieces from several de-identified individuals.

On June 26, 2000, Francis Collins, MD, PhD and Craig Venter, PhD, flanked President Clinton in the White House rose garden to announce the great sequencing, because that was the only available date on the calendar. Both groups had made nice at the end of the race. Celera actually crossed the finish line first, as Dr. Venter told me that February off the record, lest the looming new edition of my textbook be obsolete. Today the race seems irrelevant.

The First Two: Craig Venter and James Watson

By 2007, individuals began to have their genomes sequenced, and speak and write about it. Dr. Venter was first, his genome presented in PLoS Biology. He pondered the implications at the American Society of Human Genetics annual meeting a year later.

Dr. Venter learned from his genome sequence that he has blue eyes and a tendency toward antisocial behavior, substance abuse, and novelty seeking. He found out he’s a fast caffeine metabolizer. “I can have two double lattes and wash it down with a Red Bull and not be affected by it,” he snarkily told the crowd. He also learned of elevated risk for Alzheimer disease and cardiovascular disease.

Next came James Watson, PhD, of double helix fame and first head of the human genome project. He discussed his genome at the 12th International Congress of Human Genetics in Montreal in October 2011, where Kevin Davies, PhD, author of “The $1,000 Genome” introduced him. Dr. Davies has subjected himself to all manner of genome probings too. Here’s the printable part of what Dr. Watson said:

Why did he do it? “Why not? I had no objection, with the exception of not wanting to know ApoE4. My grandmother had Alzheimer’s.” (Watson’s published genome sequence omits that risk gene, but people imputed it from the surrounding sequence.)

What did he learn that was useful?
“Finding that I am a slow metabolizer of antipsychotics and beta blockers.” His son nearly died from an antipsychotic. “So I now know that if I go psychotic, I can’t take those drugs.” And he learned why beta blockers for an irregular heartbeat knocked him out. He switched drugs.

What information wasn’t helpful?  “They told me I was a carrier for BRCA1. I thought I would have to phone my nieces because their mother had breast cancer. But I asked Mary-Claire King, who discovered the gene, and she said no, I had a harmless variant. So I’m glad I didn’t call my nieces because then they would have paid that disgraceful sum of money to Myriad Genetics.”

Dr. Watson ended with a situation he knows well. “I’d like to see children who have mental illness sequenced with their parents. Finding a mutation would make parents see that it was genetic injustice. Knowing that won’t make their child healthy, but they won’t have the double whammy of thinking they did something wrong.”

Dr. Venter wryly summed up the great personal value of he and Dr. Watson knowing their sequences. “You probably wouldn’t suspect this based on our appearances, but we are both bald, white scientists.”

Genome Sequencing in Sickness and in Health

Genome and exome sequencing are extremely valuable in diagnosing people whose symptoms don’t match known disorders. “Every time someone goes into a children’s hospital with a serious disease, it would be immoral NOT to sequence him,” Dr. Watson said. The first and most famous case is that of young Nicholas Volker and his intestinal condition; I’ve followed that of 4-year-old Gavin Stevens’s blindness gene. The cases of exome sequencing solving medical mysteries are mounting fast.

Steve Jobs and Christopher Hitchens had their cancer genomes sequenced, pancreatic and esophageal, respectively, and the information guided drug choices. Henry Louis Gates Jr. had his done to trace his ancestry. Glenn Close reportedly did it to better understand mental illness in her family, and I can’t guess why Ozzy Osbourne did it.

Ron Crystal, chairman of genetic medicine at Weill Cornell Medical College, had his genome sequenced to provide a control in a project to sequence the genomes of the people of Qatar. He discovered a mutation that explained his heavy bleeding following an injury from rappelling off a frozen waterfall a few years ago. He also discovered Viking roots, a recessive disease of children, and confirmed his baldness. But he voiced fears: his family learning things they didn’t want to know, even someone using his DNA sequence to frame him for a crime or to clone him.

Dr. Crystal isn’t the only one to cite potential repercussions of knowing one’s genome sequence. Said Seong-Jin Kim, the first Korean to have his genome sequenced, and that of his wife and two daughters. “Genetic disease in Korea is thought to disgrace families, and so it’s difficult to convince families with diseases to be sequenced.” A bad result could be regarded as a curse. But he was interested in using sequencing to better understand gastric cancer, which is the most common form in Asia. “Did it change attitudes? After we released our sequence, the number of sequencing companies increased.”

Why I Don’t Want to Know

I don’t want to know my genome sequence because of a fear that someone will clone me, but because the state of the science provides both too much and too little information.

On the TMI front, a genome sequence is a mega incidentaloma, an avalanche of information I don’t want. A panel discussion on the value of genome/exome sequencing at the international congress last year was telling.

Opinions ranged from moderator Han G. Brunner, of University Hospital St. Radboud in Nijmegen, the Netherlands, who asserted that “genome sequencing will yield an excess of information that is useless, uninterpretable, and possibly damaging to the patient” to Radoje Drmanac, co-founder and CSO of Complete Genomics, who claimed “We should have our genomes sequenced as early as possible. In my mind, this is not a question.” (Disclosure: Just before the panel discussion, I ate mozzarella sticks from Complete Genomics when I wandered into a cocktail party whilst hunting and gathering. I wonder if they got my DNA from the napkin.)

At the top of the list of diseases I don’t want to know about are those of the brain, Woody Allen’s second favorite organ. If I can’t prevent or delay them, why spend years worrying?

On the too little information front, we need to know more than a string of DNA letters or a list of gene variants. We need to know how our genes interact. It’s like reading a novel and considering each word in a vacuum, compared to understanding the unfolding story.

Learning our genetic story will require deciphering all possible gene interactions. Until then, I might learn about a disease-causing mutation, but not another that counters it, and then have to live with the knowledge. Computers and researchers will need to dissect and compare many thousands of sequenced human genomes to deduce the gene interactions.

All the needed analysis is costly. Bruce Korf, MD, PhD, director of the Heflin Center for Human Genetics at the University of Alabama at Birmingham has said, “We are close to having a $1,000 genome, but this may be accompanied by a $1 million interpretation.” And when Stephen Quake, a Stanford University engineer and co-inventor of a DNA sequencing device, laid his genetic self bare in the pages of The Lancet in 2010, interpretation required 32 physicians.

Like the others mentioned, Dr. Quake found the drug information the most valuable. He leads a very healthy lifestyle, but has gene variants that raise risk of cardiovascular disease. His genome revealed that a statin drug could save his life, the bloodthinner Plavix won’t work, nor would the diabetes drug metformin. But could carefully-chosen panels of single-gene pharmacogenetic tests provide the same information, based on the age-old tool of genetic counselors, asking good questions to build a useful family history?

Convince Me

Next week I’ll be at the American Society of Human Genetics annual meeting, attending workshops on exome/genome sequencing and hunting for more mozzarella sticks. And I’ll see if anyone can convince me to have my genome done.

Perhaps I’ll do it, eventually, as part of the Personal Genomes Project, for the greater good, but elect not to know the results. After all, I already know the obvious, like Craig Venter knows he’s bald and has blue eyes.

An osteoarthritis mutation manifested itself as an inability to play an F chord at age 33. A p53 mutation and then another that bloomed in response to years of orthodontia X-rays gave me thyroid cancer a few years after I gave up the guitar. And I don’t need a genetic test to know I didn’t inherit my father and grandfather’s psychotic depression.

Ron Crystal, even though he’s among the sequenced, has the right idea: don’t smoke, exercise, eat a healthy diet, and don’t worry about DNA sequences.

That’s good enough for me – at least for now.

 

 

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28 Responses to Why I Don’t Want to Know My Genome Sequence

  1. Ron Valdez says:

    How much would it cost to get ones genome sequence?

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    • It’s not going to go below $1,000 any time soon unless there’s a new technology that looks like it could really explode. $1,000 is a number that gets thrown around a lot, but it’s just not feasible. Perhaps a $3,000 genome in the next year, but for an interpreted genome, I think you’re looking at well above that for a long time.

      And really, is it not worth that? Think about the massive amount of information you get out of it.

      I mean, consider how much individual variant genetic tests cost. It’s more than $1,000 to assess a single site in some cases. Why and how could it cost less than that to do literally every site?

      Not any time soon.

      And yeah, 23andMe sold exomes to certain people (like myself) for $1,000 about a year ago. But that doesn’t represent the actual cost–they were selling it at a “discount” because in exchange, the customers allowed them to use their data for R&D.

      An exome at cost without any analysis or interpretation is still running $5-700 at least even a year later. If DTC companies do start selling exomes to the general public (and that’s a big “if” because I’m not convinced it’s happening soon), I think $1,000 would be on the very cheap end. Exomes, not whole genomes.

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  2. Ricki Lewis says:

    Cost is expected to dip below $1K very soon — I’ll know more next week from the genetics meetings. 23andMe offered exome sequencing for under $1000 but I don’t know if they are still doing that. I hope it never becomes “trendy” to sequence one’s genome. Despite my joking, this is very serious stuff. Look to the Huntington’s Disease community for the repercussions, good and bad, of “knowing” — and that’s just one mutant gene, albeit a devastating one. HD is an exception though because penentrance is close to 100% — getting the mutation (an expanded repeat) means getting the disease.

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  3. Von says:

    Interesting article. In my opinion knowledge is always better than ignorance. When it comes to one’s health being passive is as deadly as flu.

    I’ll be first in line once sequencing my genome becomes affordable. I will also be first in line for cloning. Once we’re able to download our brain and upload it to our cloned body the conundrum of death will no longer occupy our minds.

    The gift of experience and knowledge to future generations from humans who have lived hundreds of years will be invaluable for the progress of humanity.

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  4. sarah says:

    great article!
    i agree that it would be TMI for me, but ill be interested to see if you get convinced next week!

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  5. But Darwinian success, the continuation of a species, depends upon genetic diversity, and NOT the sameness that would be the consequence of cloning. Genetic uniformity is only beneficial when a favorable environment does not change — and it’s pretty clear that our environment changes!

    If people live for centuries, where will we live? The planet is too crowded already. I don’t think we can invent ourselves around the carrying capacity, ecology ultimately applies to we superior-thinking humans too.

    Knowledge is not always better than ignorance, in some instances — such as a false positive on a medical test. Such as having one’s prostate removed when the cancer would never extend out of the capsule in a man’s lifetime. What we know about our genomes is still changing, and gene interactions as yet unknown could have an enormous impact on the significance of individual gene variants.

    I am anything but ignorant. In fact, my beef is that I want more information before I make decisions. That is why I wrote “not yet.”

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    • Von says:

      Procreation is not off the table for the sake of biodiversity. Disease however, might be using gene-manipulation based on the results from genome sequencing. We can improve humanity.

      Where to live? Ask again in a hundred years when mankind have spread to other planets.

      Knowledge is always better than ignorance, while the misreading or the abuse of the achieved wisdom might not be.

      I agree in your demand for more info, in fact the various institutions in our society – including science – have a direct obligation to inform the public about the consequences and the risks of any initiative that affects humanity as a whole. I demand, however, that we as individuals get to decide which way we want to go – and what risks we personally wish to take on our chosen path.

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  6. I don’t want to do a full take-down of this, but I did blurb a response yesterday. Sufficed to say, I don’t find the arguments here compelling, and worse, I find them a bit damaging.

    As I said in my response, I think it’s fine if you want to live in ignorance of your own biology. A lot of people do. But that doesn’t mean that we are incapable of interpretation or that we should treat it like some insurmountable task. And it’s not like getting sequenced now means that you have to live forever with a misinterpretation or a lack of understanding.

    The interpretability of our genomes is ever-improving. Look at the massive amount of information released by ENCODE recently and tell me it isn’t so.

    I learned a lot from my own exome not only about myself, but also about how to interpret that kind of information. That’s not to say the general public is “ready” for it. But there needs to be a recognition that fields like genetic counseling and bioinformatics need to be encouraged to bring that understanding to the medical community and the public. And they can be propelled by an increased interest in having genomes sequenced in a positive cycle.

    To sit here and say, “Well, I don’t want to do it yet because the whole framework for telling me every last answer isn’t ready yet,” isn’t going to get that done. But I promise you, there are a number of companies and institutions working on getting there, and we’re going to see them explode on the scene next year.

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  7. Ricki Lewis says:

    Sometimes it is helpful to express an unusual or unpopular viewpoint, to get people talking. I think my blog accomplished that, and included opinions other than my own. Yet another blog about “here’s what I learned from my exome/genome” may be interesting, but no longer very original. And you completely misunderstood me. I very clearly stated that I would have my genome sequenced for the general good — I just don’t want to know the results now. How is that impeding progress?

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    • Thanks for your reply.

      To be fair, you said, “Perhaps I’ll do it, eventually, as part of the Personal Genomes Project, for the greater good, but elect not to know the results.” That’s not really the same as saying you want to do it or think it’s worth doing now. What I’m saying is that if everyone waited for interpretations to be perfect, they’d never be perfect because we wouldn’t as a field have the data and experience needed to get there.

      What I think would have been a bit more impactful would have been an assessment of areas we could improve on with regards to genomic interpretations and translation to the clinic rather than simply bludgeoning the whole idea of sequencing as if it provides very little useful information that couldn’t be obtained from other means in order to justify your decision not to sequence yourself. You briefly touch on it in a very general sense, but then go on to belittle the whole thing by suggesting most of what it tells us is information we already know (which isn’t true) or could get through alternative means (which does not commonly happen and is very expensive).

      Take this example from your post:
      “Like the others mentioned, Dr. Quake found the drug information the most valuable. He leads a very healthy lifestyle, but has gene variants that raise risk of cardiovascular disease. His genome revealed that a statin drug could save his life, the bloodthinner Plavix won’t work, nor would the diabetes drug metformin. But could carefully-chosen panels of single-gene pharmacogenetic tests provide the same information, based on the age-old tool of genetic counselors, asking good questions to build a useful family history?”

      Okay, but is that the entirety of what he found out? And are those tests that he would have had before trial-and-error? You don’t say here. You suggest using genetic counselors, traditional single-gene panels and family history is going to tell you the same information here, but it’s clearly not true for every case.

      It’s kind of a confusing post because it seems to blend DTC and clinical sequencing applications, and you bring up all sorts of problems without any hints about solutions, which suggests there aren’t any. On the one hand, you’re arguing that you don’t want to know your genetics because you might learn things that you don’t like. That suggests you’re talking about DTC, something that wouldn’t go through the filter of a genetic counselor or medical professional. On the other you’re arguing that the clinical utility is not high (despite evidence to the contrary and the fact that the medical field clearly sees value, which is why it has invested so heavily in sequencing). I don’t understand why you’re lumping them together this way.

      It’s great to present an alternative viewpoint. It’s great to make a case for why you don’t want to know your own genetic information. But it’s not great to say it’s because it has limited clinical utility because that’s not true. And it’s not okay to act like it’s all-or-nothing, like clinical sequencing is the same as DTC, because it is not. Those are the things that rubbed me the wrong way when I read your post.

      Basically, you can discuss why you don’t want to sequence yourself without throwing the entire field of genomic interpretation under the bus, which is kind of what it felt like you did in this article to me at least.

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  8. Dmitry Pruss says:

    One of the greatest pleasures of getting your genome now is exactly in the uncertainty of the interpretation, and in the errors, and in the exciting leads which often lead nowhere. Like old-fashioned paper-and-microfilm genealogy research. Like househunting. Like exploring the routes on a face of a great moubtain. Like geocaching puzzle hunts. Like crossword puzzles. Some solutions are trivial, but they aren’t the one you remember the best.

    Your genome is your personal puzzle, and the path to discoveries may be more memorable than the practical little clues you may finally extract from it. The only truly practical thing I learned so far is, like with most genome pioneers, a specific drug adverse rxn which did happen in my family. But I’ll have lots more fun with this pile of data.

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  9. Well, Dmitry, I said I was open to someone trying to convince me, and your argument is the most eloquent and sensible I’ve heard. Yes, everyone seems to agree that the pharmacogenetics/genomics are the most immediately useful types of information, and even pharma has come around because financial losses may be temporary and self-limiting as people discover which drugs will work and which won’t. I’ll never forget my mother taking one horrific, nonworking chemo after another — she could have been spared great pain if she’d known ahead of time what wouldn’t work, for her. Thanks for commenting.

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  10. I have to say that I’ve never understood the mentality behind being scared of a genome sequence, and I speak as someone who was diagnosed a few years ago with a fairly damaging genetic disorder. Prevention and preparation are everything, and had I known earlier because of a routine sequencing instead of much later with a genetics test, some months after serious symptoms were appearing, I would have been in a better position to deal with the ramifications.

    It seems to me that there is a general fear of human biology that some people feel and, to me, it looks like sticking your head in the ground and pretending that everything will be wonderful. It seems that the major apprehension is being told that you have a predisposition to something that is beyond your control and you’d rather not deal with that knowledge, but that strikes me as short-sighted. In fact, knowing about it beforehand gives you *more* control even if not complete dominion over it. Doesn’t knowing that something bad could happen allow a kind of freedom to enjoy the best part of your life? Doesn’t knowing in advance give you time to arrange your life in the way you think is best instead of having a mystery illness snatch away your autonomy when you’re not expecting it? And, far from these things just being eternally incurable, wouldn’t it push you into action, making you want to campaign for medical research which might not only save you but also many others?

    The only genuine downside there seems to be is, for some people, anxiety, and this makes me think rather simplistically that there are controlling personalities (like mine) and “drifters” who would rather course through life without a care for planning the future. There is no right personality and no right answer to the question, but I certainly cannot imagine what it is like to inhabit that kind of mind. I do think, however, that all people of any disposition should be educated in such a way that we don’t treat illnesses like foreign invaders come to rob us of our humanity – if one thing helped me more than anything else, it was the recognition that my circumstances were the mundane result of a technical malfunction in my DNA sequence, and that there were concrete methods to solve a finite puzzle.

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  11. Thanks, Callum. I’ve come to know more about life with genetic disease from the wonderful families I’ve met while writing my gene therapy book than anything I learned in school.

    At the risk of sounding defensive, I did state a few times that I do not wish to know my sequence right now — that doesn’t mean I won’t in the future, possibly even the near future.

    Last week I was all set to go with a blog on some interesting new research that was breaking news, on the same topic that a week earlier I’d mentioned a paper from 1893. Then the announcement of the research was delayed due to the terrible storm, so I couldn’t run the blog. With a few hours to go, I wrote the blog about not wanting my genome knowledge right now. I’m undecided.

    My goal in writing the blog was to spark a different sort of discussion. With all the articles and books written by people having their genomes sequenced, I thought it might be interesting to consider a different viewpoint. And as I mentioned earlier, my thinking was inspired by the Huntington disease family members who choose not to know. That’s their right, even if it appears ignorant or even uneducated. I do genetic counseling, and sometimes patients do not want to be tested. They can be educated and still choose not to know. Of course with genetics there’s the huge complication of results affecting others. Anyway, it’s great that people are responding to this topic.

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  12. Amanda Smith says:

    I’m gathering some research for a debate and found this very interesting. I couldn’t find very many other sites giving reasons for not having their genomes decoded and so this was very helpful. Thank you :)

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  14. harleymc says:

    Having been at the pointy end of HIV based discrimination, including but not limited to; discrimination in education provision, employment and insurance (which has had flow on effects to the banking/mortgage industry), I can see very real potential for genome sequence information causing a lot of problems for a lot of people.
    With cloud storage of data there is no way that the security and privacy of this data can be guaranteed.
    Genome sequences also could cause very real problems for relatives of people sequenced. People who chose to have their genome sequenced may be giving consent ( we can argue about whether this is informed consent) but are these subjects gaining consent from their relatives, who will surely also be impacted?

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    • Harley, this breach of confidentiality of genetic information has already happened. See “Identifying Personal Genomes by Surname Inference,” Science, 1/18/13. Identities of patients and relatives were cracked with google searching! Very scary — but somewhat predictable, I think. The forensics community has worked on this principle for years, in familial searches, which are ethically questionable.

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  16. Dan Ahomaki Kilburn says:

    Ricki, the most sensible, moral and ethical reasons I can think of for sequencing my own genome is that it contains mutation(s) causing early onset blindness and death, to put it baldly, that have spread though a wide and deep family tree, wreaking havoc on a large group of people dear to me, including both my children. And since I’m a genomics scientist, I’d kind of like to get to the bottom of this before I croak, so that people more skilled than me can improve the ineffective options we have now. I’ll be putting not only my own genome and deeper sequencing data, but sufficient data from affected individuals into the public domain with the complete phenotypic picture to give everybody a fair crack at the problem. And surely, others beyond my own blood will benefit, even it’s too late for many of us. Is there a downside? Not when you bear responsibility as a son, scientist and father with the training and experience to push our understanding of this devastation forward.

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    • Dan, I’m so sorry about your children’s visual loss.

      Sometimes it is helpful to play devil’s advocate to get a conversation going, which that blog post did. I’d have my genome sequenced and put in the public domain, but would like my choice and right not to know to be respected. So, yes, there could be a downside if personal information is forced upon someone who would not want to know. I’ve had a few false positive situations in my family and it can be very disturbing. That could happen with a genome sequence done before all possible epistatic interactions are worked out.

      I was getting a little tired of all the journalists and scientists and others getting their exomes/genomes sequenced and writing about it, and wanted to present a different viewpoint.

      Thanks for writing.

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      • Dan Ahomaki Kilburn says:

        Thanks for the response, Ricki: just two more points. My children have the death gene, and those of us who go blind actually have a better chance at longevity than most. I’ve seen the reluctance to know about one’s genome, or share it, within my own family, and I respect those choices. My response is my own, born of my own training and proclivities, and the hope to prolong the odds of my own children’s survival, which is likely hard-wired in all of us.

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  17. Maureen says:

    Well, people have the freedom to choose to sequence their genome or not. At this point we are not capable of telling the patient everything about his/her genetic variants and even if we could, we are not sure how to deal with it. However, I still think it is worth getting our own genomes sequenced. The more we sequence, the more complete the picture will be. We can start to see how it is for a population at large, not just 1000 genomes, etc.

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  18. David Gronbach says:

    As of this date, where is the best (and most affordable) place to get my whole genome sequenced? I don’t mean 23andMe. That’s not full genome sequencing. Can I get a discount if I purify my own sample before shipping it off? I am someone who has that kind of training.

    If I find something I can’t do anything about…well…I can’t do anything about it so… The technology is still pretty new and I have the maturity to take whatever I read with a grain of salt.

    I have some reservations about signing up for the PGP. Isn’t it ironic that PGP used to stand for “Pretty Good Privacy” and is an encryption protocol? LOL. My inner scientist is telling me “do it…just do it” and my inner neurotic is telling me…”don’t do it…they’ll find things out…it’ll be like being dropped naked into the middle of a crowd”

    One the one hand, I’m willing to openly disclose my genome, but would really prefer it not be made publicly available. I don’t mind if someone has to send in a request with some reasons why they want it. So, freely available provided certain requirements are met. In other words, just because they have the permission to go public with my genome doesn’t mean they should. I’d at least like to be told, “hey, we gave your genome to an ax murderer in a lab coat…sorry about that”. I guess it’s not knowing who will end up with it, why it was requested/downloaded, and how it’s being used that bothers me. As I said, I have the ability to read my findings with a grain of salt. But I’m afraid of someone who takes themselves too seriously.

    Regarding employers…well, I prefer they find out *after* I’ve been hired that I’m a deranged lunatic LOL My friends and family already know this and love me anyway. It’s part of my charm :-) I mean, c’mon…normal people don’t love spending hours in a lab swabbing Petri dishes, lysing cells, pipetting, gel electrophoresis and performing PCR.

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    • Hi, David, thanks for writing. I’m at the human genetics meetings right now, are you here?
      Try Illumina. They hold 2-day workshops for physicians to have their genomes sequenced, to teach them how to incorporate genome sequencing (not the 23andme SNP sweeps) into the clinic. Perhaps they’d let scientists in. I may attend a workshop but still am not convinced I want to have my genome sequenced. In fact, I am at a symposium right this second about the Sanger Center’s program. They have data on reporting of incidental findings, and the genetic professionals are the most conservative about returning such data. So my not wanting my exome/genome sequenced is not out of the ordinary.

      While we are on the subject, if anyone out there has had their genome or exome sequenced and would like to provide feedback to me, I’m going to include a section in the next edition of my textbook called “A Gallery of Genomes” — to find out why people are doing this, what they’re learning, and how they feel about it.

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      • David Gronbach says:

        I’m currently in San Jose trying to finish some reports for school, cramming for a final and trying to compete with brains that are 20 years younger than mine :)

        I looked at Illumina. They have a few choices though I’m not certain which would be best the satisfaction of my own curiosity. I think I’d like the physician’s report but since I’m not a physician I think I need one (or a Genetics Counselor) to obtain it. The price range for Illumina is around $7K. This is why I wanted to know if I could get the price down by doing some of the prep work in advance. Probably not, but it can’t hurt to ask, right?

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  19. MannyHM says:

    Knowledge of such genetic sequence would imprint a sense of superiority (or inferiority). Such knowledge builds up a permanent future anxiety. You might hear somebody asking the question – Yes, I have that gene. What should I do now ?
    That kind of information is a complete distraction from enjoying life fully.

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