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  • since the beginning of life itself, our ancestors have left us the ultimate legacy.

  • They're Deanna.

  • But lately, even that is subject to change, as we can now pre select genetic code we bestow on our kids.

  • Recently, I had to sign a form promising I wouldn't have sex with my wife.

  • Why it was because we decided to have a baby.

  • Let me rewind back to the only time a mullet was considered acceptable haircut.

  • The 19 eighties.

  • Here we have Philip, a young and carefree man in his mid twenties Filled, was working on a Sandridge mining silica in the waters off far north Queensland.

  • After every shift, Philip would leave the dredge with the other miners on these narrow planks back to solid ground.

  • But when Philip started the night shift, he was getting a blinding star EOD effect.

  • While the other men joked and laughed across the planks.

  • The supervise was shocked to say, Philip, crawling on his hands and knees, unable to say fearing is also it would get worse filled, decided to leave his job and returned to Sydney to try and discover what was happening with his eyesight.

  • And if there's anything he could do to fix it.

  • You're so many specialists, including ophthalmologist.

  • Look to Frank Halliday.

  • Dr.

  • Halliday did extensive tests on Phillips Oz and suspecting a genetic link healthmap Phil's family tree, collecting a full 100 blood samples from Philip's relatives.

  • Ultimately, Dr Halliday concluded that Philip had a form of retinal dystrophy, that he would continue to lose his.

  • I thought there was no cure and in time would go completely blind.

  • This happened within five years.

  • At just 30 years old, Film was declared legally blonde, the same age I am now.

  • Fill three, trained to become a massage therapist, a job he could do with these hands without his eyesight.

  • He also became a father to a daughter he named Haley.

  • 28 years later, I'm married.

  • Haley Filth is my father in law.

  • When Hey and I decided to get married with the hope of starting our own family one day, we sought advice from genetic experts because we knew the films condition may be hereditary.

  • By coincidence, the genetic counselor and scientists we first saw were actually, students of Dr Halliday knew of the case and were amazed to discover Phillips daughter walked through their door.

  • Nearly 30 years later, they confirmed the film's condition was hereditary and a tape of genetic experts from Sydney End the UK, helped analyze films.

  • Dana In order to find the mutation that causes blindness, Dina is made up of full base letters.

  • G sees teasing eyes.

  • They're trying to find the one letter difference among these letters and TV's the subspace active.

  • That's two million more of these pages among the three billion.

  • They said it would take months to find, and it did.

  • But amazingly, they found it.

  • Dr Holidays.

  • Previous research, coupled with data from a distant relative in Perth who also carried the disease, was invaluable and finally giving Philip a definitive diagnosis for his condition.

  • This condition was called retinitis pigmentosa.

  • It's an excellent X linked hereditary disease where men are usually affected.

  • The women are carriers with symptoms that can occur at any age.

  • It causes the degeneration of cells in the retina, resulting in complete loss of sight.

  • Harry was confirmed as a carrier.

  • We suspected this, but the unexpected was when we heard I still remember the moment.

  • Clearly it was one of those moments where time seems to stand still because we were completely unprepared to you the news that she, too, may begin to lose her eyesight.

  • This will have in a month before our wedding.

  • I can tell you there's nothing quite like that at that little bit more stress to the wedding plain I'm in or Haley.

  • She took on this news with determination and courage, despite being wide for our future.

  • How much heart it would be to have a baby to raise Children if she lost her.

  • I thought she was also wired for May more than usual.

  • She was wide, so close to our wedding.

  • Was this still the future?

  • The life that I wanted?

  • Well, she wasn't getting away that easily.

  • I would support her no matter what would one day hopefully start a family and we would do it together as a young, otherwise healthy couple, we were told that should have no trouble conceiving naturally.

  • But if we did, we had a one in two chance of having a daughter.

  • There was a carrier like highly and a one and two chance that a son would be affected by the condition like his grandfather filled next time at the Royal Prince Alfred Hospital gives number of options.

  • One flipped a coin, conceive naturally and hope for the best to conceive.

  • Naturally test for gender 12 weeks and with the option to a border Mao.

  • There's also 1/3 option as they are now able to locate the mutation.

  • They said it was possible to build a genetic test to identify the effective Jane in an embryo we had a choice to avoid passing on this Jane are proceeding with IVF in vitro fertilization, complaining Hayley's eggs, the largest cell in the body and my spirit smaller cell in the body.

  • Analyzing the resulting embryos and only transferring one did not carry the condition.

  • This procedure is called preimplantation genetic diagnosis, or PGD, because I'm not sure I can keep saying preimplantation genetic diagnosis.

  • So Paige.

  • It involves creating a number of embryos through IVF in a lab 3 to 5 days after fertilization.

  • As the cells begin to divide and multiply, one or two cells are removed from the outside of the embryo, not the initial mass that will make the baby.

  • These cells then tested for any abnormalities off which they said they would give us 99% certainty We're excited.

  • This is close to a cure that we could hope for.

  • We had questions by undertaking embryo selection would reveal labeling Phillips life.

  • There's something undesirable, something to be avoided at all costs.

  • We made sure to get his honest point of view.

  • While feel often downplays his condition, what's anything is like but not having to turn the lights on.

  • He saves money on electricity.

  • He was uncharacteristically serious when he told us that he would give anything he had for our Children to have their Assad, he said.

  • If there was any chance that we could avoid passing on the disease, then we should take it.

  • In the past, there was not much a couple could do when confronted by genetic disease other than do nothing and hope for the best.

  • Thus, the idea of harnessing technologies to change our future is a powerful one.

  • As page, it involves analysing and selecting healthy embryos.

  • It's giving hope to couples with recurrent miscarriage, advanced maternal age, the couples with recurrent IVF implantation failure.

  • It's also giving hope.

  • Two couples with a chromosome or genetic abnormality in their families, diseases like retinitis pigmentosa, taste sex, assisting five rices diseases that can cause immense suffering.

  • The debilitating well, it can kill a child before they rated preschool age with peih gee day.

  • A couple now has a choice in taking steps.

  • Try initial a healthy pregnancy, a healthy baby and avoid passing on a genetic today's forever.

  • But there's also feed the page.

  • A day might be just the thin edge of the wedge argue be leading to the creation of designer babies.

  • This fee was once under in the domain of science fiction that's famously depicted in the 1997 film Gaga.

  • Gotta Get Two Peaks.

  • The Future Society where embryo selection has led to a eugenic dystopia Were people conceived in the traditional way I considered vastly inferior to those who begin life in the lab as Page today involves discarding or indefinitely freezing embryos.

  • There are many if your ethical issues conflicting views on moral stances surrounding it.

  • Recently, there has been much controversy on using page a day on otherwise healthy embryos and selecting them purely on the basis of late onset diseases like Alzheimer's susceptibility to certain cancers.

  • Jane matching in order to create a donor child for older sibling and perhaps most controversial of all non medical gender selection or physical or aesthetic traits like here, or I call along from getting got.

  • What first began as a means to rid society of inherited diseases has become a way of designing your offspring, the line between health and enhancement.

  • Blood forever.

  • The distinction for Helen and I was that this wasn't about wanting to have a child, that eyes that were blue but wanted to have a child that I was, that could say.

  • So we decided to use the technology that was now available.

  • Peggy Day Preventive measure.

  • It followed your typical IVF for, say, John twice a day for two weeks.

  • I would help Haley with the hormone injections to make her super ovulating, but instead of producing one egg that month should produce six days.

  • That's why I had to sign that no sixth form, because if she got pregnant naturally, well, I'm still not sure Why shouldn't become double octomom.

  • As the weeks went by, we had every hope to the process would be a success.

  • But after reaching the first round of embryonic testing, the news wasn't good.

  • Four embryos had made to the testing stage, but none ofit for transfer.

  • Among these was the otherwise healthy but affected mail.

  • Sure to develop ridden I speak men Tosa and would be discarded.

  • Our faith in the process begin to waver.

  • Have we made a mistake?

  • Have we allowed a chance of a life to Beta Scott?

  • It a baby that was so wanted?

  • We struggled with these thoughts far removed from the original hoping and excitement that we shared when you first decided to have Children.

  • As anyone who's been through it will tell you, Avi F is long and arduous in a fraction of the fun of conceiving naturally the thought I've had to do it all again with the tests, the needles, the hormones, the mood swings and that was just may, the clinical white walls.

  • The many anxious months waiting and the possibility that it might all happen again was daunting.

  • But this is the burden face for any couple wanted to use PGD as another one of the hurdles we face was how we're going to afford it.

  • It's financially to Bill's heading off the unsuccessful first round.

  • We'd already used all our life savings.

  • We couldn't give up.

  • We've chosen this path to ensure that our child had the best chance of a life without inherited disease.

  • You do another attempt I would have to borrow.

  • So he did.

  • We went in for a second round, but this is the burned face.

  • For any couple predisposed to a genetic condition using page today, a major issue is affordability, equity of access and lack of government support.

  • In the most recent application to the middle of the Australian Medical Service is advisory Committee for the Public Funding of Page a Day.

  • It was made clear the piggy D is not to reduce the number of individuals dame costly to society, nor to diminish society's willingness to care for those disability or genetic abnormality.

  • But there is important clinical made the Page E Day in God ing reproductive decision making.

  • Ask any parent what they wish for their Children to be healthy.

  • This is exciting.

  • The future is broader for these couples facing hereditary disease.

  • That's why I don't think she'd be only for those that can afford it, excluding many others that really need it.

  • Songs will also keep progressing as we draw nearer to the possibility of editing out our own James we need to consider and talk about genetic technologies implications now how used ethically and responsibly, especially for the health of a child, not the top of child.

  • I believe that we should encourage and support people whose reproductive autonomy, using effective framework, off counseling, information and conversation.

  • Hey, JD, has given us an option where couples only often had a bleak outlook before, but I don't think it should be for anyone that could afford it.

  • Peggy is given couples the ability to choose a n a hereditary disease.

  • I think we should give every potential parent that choice.

  • Finally, an update of the second round.

  • We got a healthy embryo.

  • In fact, it's the one I showed earlier.

  • We transferred that successfully and Halley is pregnant.

  • So fingers crossed from here on out.

  • And then the wrist is easy, right?

  • Thank you very much.

since the beginning of life itself, our ancestors have left us the ultimate legacy.

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遺伝子の選択が個人的なものになるとき|アラステア・オニール|TED Institute (When genetic choice becomes personal | Alastair O'Neill | TED Institute)

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    林宜悉 に公開 2021 年 01 月 14 日
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