The Cost of a Life

This week saw the relaunch of the longitude prize which was originally set by the Britishgovernment 300 years ago to encourage inventors to find a way for ships to pinpoint their positions on long ocean voyages.

It was relatively simple to work out a ship's latitude by looking at the position of the sun in the sky. But longitude, which is how far around the Earth's surface the ship was, was much harder to figure out. This prize led to a new method being developed to make determining longitude much more accurate

This new prize offers £10 million to individuals who can solve 6 pressing modern day problems.

Kate Lamble went to see the chair of the committee, astronomer royal Professor Martin Rees who started by explaining the original longitude prize...

马丁-在1714年,政府通过了一项经度gitude Act and this allowed them to offer a reward of up to 20,000 pounds, which is like several million in today's money, for someone who found a way to determine longitude accurately, and specifically this had to be within 30 miles accuracy after transatlantic voyage.

Kate - And who solved the problem in the end?

Martin - Well, the interesting thing was that the solution came from John Harrison who was a real outsider. He was a Yorkshireman, started as a carpenter and joiner, and he over 40 years developed more and more precise chronometers. He won with an amazingly precise instrument, a pocket size clock which was robust enough to survive transatlantic voyages. At that time the prize was setup, it wasn't clear that clocks where the route at all. They established what many astronomers thought that it would be solved by a precise measurement to the moon and the stars. So, he was an outsider and it was a good example of how, by having a challenge prize, you draw in outsiders and allow a variety of approaches to play against each other.

Kate - I love the fact that the first reason of him being an outsider that you mentioned was being a Yorkshireman, never mind the joiner or carpenter. The Yorkshireman comes first. So, if it's a good way of bringing in outsiders why do we want to renew the Longitude Prize today?

Martin - Well of course, the scene is very different today. There's not just one big challenge but many and of course, there's a huge amount of incentives being offered by commercial bodies and other government bodies.

In fact, the 10 million pounds may seem a lot, but it's a thousandth of what the UK spends annually on our R&D. So, it's not going to change the world, but it is going to make a distinctive contribution because a well-configured prize has a number of benefits. First, it would allow lots of people to participate including some outsiders. Secondly, it can attract public interest in the progress towards the goal. One has to configure the prize so that it's challenging but not impossible. Also, the judging is objective, so it's important that the judging should be objective like in athletics, unlike the Oscars or the Turner Prize for instance.

Kate - So, if longitude was the big problem back in the day, what are the problems that we need to tackle with prizes today?

Martin - There are very many of them and I've been chair in the committee which has been picking out six areas which we think are socially important and where we think a prize with an incentive of 10 million pounds could make a difference.

These areas are:

• First antibiotic resistance, ways in which for instance someone in Africa can decide cheaply and accurately whether they've got a viral disease or bacterial disease.
• Looking after patients with dementia.
• Looking after people who have handicaps in mobility using advanced robotics and other techniques.
• Food for the world, new techniques to enable us more readily to feed 9 billion people.
• Clean water for the world. Many people are in places where they need to purify water or desalinate water.
• In the transport area, perhaps a way of moving towards zero carbon flight.

So, those are the six areas and what's going to happen is they have been announced in a TV programme last Thursday - Horizon programme and that opened the voting. Anyone can vote and the results of the vote will be announced on the One Show on the 25th of June.

And then what will happen is that our group will focus on the favoured challenge by the public and try and configure a prize. It's got to be a prize which is of the right level of difficulty, etc. So, that will be a job for us over the summer. And then the timescale for the prize would be not the 50 years that it took to solve the Longitude Prize, but something like 5 years and we would hope for there to be intermediate steps along the way so that the public can follow progress.

Kate - The original prize was solved by an outsider. Are outsiders really going to be able to help with antibiotic resistance and robotics, and more complex things we're dealing with nowadays?

Martin - Well with the example of antibiotic resistance - clearly, drug development is not the kind of thing that one is going to incentivise by this prize. But clever, simple bits of equipment which may be in conjunction with mobile phone, allow people to diagnose what sorts of disease they've got. And as regards to outsiders, anything involving software for instance can be done by very many people. It doesn't involve big bits of equipment. So, it's very important that challenge should be something that isn't going to be limited to the big battalions.

Ginny - I better start thinking about my 10 million-pound idea then. That was the Astronomer Royal Martin Rees and you can help decide which of the 6 topics gets chosen by visitingwww.longitudeprize.org/your-vote.

Hannah, what do you think you'd vote for all of those?

Hannah - I probably should vote for either the paralysis or the dementia because my background is in neuroscience. However, controversially, I think my vote would be cast in more looking at sustainable food for the world and also, clean water supplies.

Ginny - I think if you want to make a difference to the biggest number of people, then water has to be the most important thing because it's just so vital. But then if I'm thinking more personally, the things that scare me about my future, it is dementia and its antibiotic resistance. So, it's a bit of a conundrum for me.

Hannah - One of the questions is whether 10 million pounds of Grant payer's money, whether this is a good idea to ask the taxpayers to help vote and to get involved in research in this way. As Martin said, this is only 0.1% of the total amount of money that goes to R&D set aside by the government. So, in some ways maybe it would be nice if we did these types of challenges or public awards more often?

Ginny - I think anything that gets people more involved in the process of science has got to be good.

Hannah - Thanks, Ginny.

Ginny - Now, I don't know if you're a football fan. I must admit, I'm not, but even I无法逃避谈论即将到来的世界杯在胸罩吗zil. Conditions there are predicted to reach fever pitch for more than just the matches though because a new disease forecasting system is predicting epidemics of dengue fever. Dengue is a mosquito-borne viral illness that causes high fevers and severe bone and joint pains. In some cases, it can even be life-threatening. Dengue is endemic in Brazil and it follows a seasonal pattern linked to the weather with conditions that favour mosquito breeding, making an epidemic more likely. Now Rachel Lowe and her colleagues at the Catalan Institute of Climate Sciences in Barcelona have designed a computer model that can forecast 3 months ahead the likelihood of dengue epidemics in a given geography. Rachel gave Chris Smith the details...

瑞秋-我们一起把一个预警系统m for dengue fever in brazil which brings together many different risk factors for dengue and climate information. What we then do is use forecasts of the climate information to try and predict where it may be more likely to have dengue epidemics.

Chris - This is of course relevant because pretty soon, FIFA estimate more than a million people are expected to descend on Brazil for of course the World Cup.

瑞秋-没错。所以在这种情况下,我们聚在一起with the climate services in Brazil and the Ministry of Health, putting together the latest data on the dengue cases and the temperature and precipitation for the month preceding the games to try and say when and where there might be more likely to be dengue outbreaks or not.

Chris - So, how have you used the information we have on what's happened in the past in Brazil to try to make these predictions about where there'll be activity around the country?

Rachel - We took the dengue cases over the last 14 years for 553 regions of Brazil, combined this with information on climates and also non-climatic factors. We combine this into a model and then we used severity thresholds that are used by the Ministry of Health to work out the chance of dengue cases exceeding medium and high levels. We looked at the performance of the early warning system on past data and using this, we devised optimum trigger thresholds to indicate whether low, medium or high warning should be issued for the 12 host venues.

Chris - I see. So, by using data of what has happened in the past and how those weather patterns and so on coincide with the sorts of numbers you get for dengue, you can then have a sort of system that will enable you to predict, if the same climate patterns come along this year, this is where we would expect to have activity of the following amounts in these different geographies.

瑞秋-没错。The model takes into account differences in dengue throughout the year and also, in different ecological zones.

Chris - When would the dengue season normally be in Brazil?

Rachel - Mainly between January and May.

Chris - So, by the time most of the people would be visiting, we would expect the disease activity to be waning.

Rachel - Yeah, we'd expect it to be exactly on the decrease.

Chris - But what does your model say about the different areas where the different parts of the World Cup are going to be played?

Rachel - In the 3 north-eastern cities of Natal, Fortaleza and Recife, there is an increased chance of a dengue outbreak. There are medium levels in some of the other stadiums such as Rio de Janeiro, Salvador and Manaus, and in the southern cities, the risk is most likely to be low.

Chris - Can you just tell us, what does a high risk mean?

Rachel - The way we defined it was a probability of dengue cases within the micro-region exceeding 300 cases per 100,000 inhabitants.

Chris - What's the likelihood of those 3 areas - Natal, Fortaleza and Recife are going to have those sorts of numbers?

Rachel - The probability of exceeding that threshold in Natal is 48%, in Fortaleza 46% and in Recife 19%.

克里斯-这是很嗨的合理机会gh dengue activity in 3 areas which do overlap with where games are scheduled to be played.

Rachel - Yes, so the idea of this model is, it's capable of issuing warnings 3 months in advance. That can be incorporated into the decision making of the local authorities and the dengue control people to help concentrate intervention activities in those areas.

Chris - Would that mean for instance spraying for mosquitoes, giving people advice, telling people to wear mosquito repellents for example.

Rachel - Yes and the dengue control teams have been going house to house, checking for potential mosquito breeding sites, destroying them.

Chris - What do the Brazilian authorities say about this? I presume you've shared your findings with them.

Rachel - Yes. We actually are, our Co-authors included scientists from the Ministry of Health. They've been very supportive of the study. They provided inputs about how to use these results in the health policy way and they provided us with the latest data in order to produce the forecast.

Chris - But more importantly, have they also now formulated a strategy for the World Cup based upon your predictions which suggests that there are 3 hotspots which fans maybe need to be aware of and which authorities need to act on.

Rachel - The National Dengue Control Programme are working very hard in all the cities ahead of the World Cup to make sure that the dengue risk will be at the minimum.

Ginny - Dr. Rachel Lowe from the Catalan Institute of Climate Sciences in Barcelona.

Hannah - First up, in the UK our National Health service, as we hear in the newspaper all the time, has limits on its budgets. And that means we have to decide which drugs we can afford to fund and which are out of our price range.

So how do we decide which drugs we have access to on the NHS?

NICE or the National Institute for Health and Care Excellence, are the body that makes these recommendations after balancing the number of years of life that would be added due to a medicine and the quality of that added life with the cost of the medicine to come up with a figure known as a QALY.

Kate Lamble asked the Director of their Centre for Health Technology Evaluation, Carole Longson how they come to a decision.

Carole - We could talk about this in a very technical way. We use health economics and cost-effectiveness analysis. So, they're the technical terms but in essence, at the heart of it is, trying to understand the added benefit that a medicine or other technology might bring and compare that to the added costs that we have to incur when we're using that. that's called cost-effectiveness analysis. But it's very much like looking at a budget and thinking about the best way to spend the money that they have available to deliver the best effects.

Kate - So, when you have to know how effective the drug is, who gives you that information?

Carole - Increasingly, we're taking a look at medicines very early and as a consequence of that, we rely quiet heavily on the companies that produce those medicines to provide the evidence to us. And added to that, we ask patient groups, we ask health professionals to give us information and an understanding and experience of what it's like to both live with that condition and also, manage that condition in the healthcare service. It's all that information that comes into our decision-making which is done by an independent committee. It's not NICE staff that sit on that committee. An independent committee that takes a look at all of that evidence and information in the round when judging whether or not a new medicine is in fact, good value for money.

Kate - Some people like for example the science journalist Ben Goldacre argue that there's a bias in the evidence that some pharmaceutical companies produce towards positive results and negative results that show it's not that effective, aren't necessarily brought up. Do you think that that can in any way influence NICE's decision?

卡罗尔——所以,Ben Goldacre谈论there is what the researcher's term, publication bias, it's actually a very standard common phenomenon in science overall. So, it's not just about the companies. In that researchers tend to want to tell people about their positive results. When the results are not so positive, tend not to want to publish. And you do have to be very careful that you're looking at all of the data. We would use both published and non-published data, but you're right. it is a very, very important aspect of all science to be honest that you are careful about the data that you are looking at and you make inferences about what data may or may not be available at the time that you're looking and making the decision.

Kate - So, you take into account evidence published and unpublished, but also these personal accounts of what it's like living with a disease for example. How do you make that idea of this cost-benefit analysis? Is any amount too much?

Carole - This gets into the area of, again, an economic term called 'opportunity cost'. You've got a pot of money and if you use it to buy something, you can't use it to buy something else. You can only spend the money once. And through some analysis, we can understand what it is, the health service in particular is using their budget for and also, how much health they're generating for that spend. We use that as the basis of estimating value for money. That opportunity cost translates into something called a cost per quality adjusted life year so another technical term. And at a particular level of a quality adjusted life year which is 20,000 pounds per quality adjusted life year, we know that the NHS gets good value for money at that level.

Kate - And so, this 20,000-pound figure, when we're talking about a quality adjusted life year, are we saying that if I were sick, that would be a good year of my life.

Carole - What we're saying is that a new technology can bring improved quality of life. So, how well you're able to undertake activities of daily living for example or extend your life, or hopefully, both of those things. So again, it's not about the cost to gain that particular increment. It's about how that increment stacks up against how much you have to pay to gain it. That's really at the heart of what we do. It's not the whole thing that we take into account because all of those patient accounts and thinking about the efficiency of the healthcare system also feeds into the judgement which in the end, the committee has to make it. So, it's not an algorithm. It's not a flowchart for how to do this. It's a judgement.

Kate - So, NICE sort of acts as the gateway to the NHS which is quite a big market for drugs I suppose. How much is their - you're the doorman sort of guiding the way and they have to be effective and how much is their some kind of negotiation about the price or can they come back to you if something is rejected?

Carole - Now, that's a really interesting question. Yes, we probably do see our role, both as - I suppose as gatekeepers and enablers. So, we do have to be very careful that the NHS in using new medicines is spending that money as wisely as they can. But we have to do that in a way that enables these promising new innovations to be used in our healthcare system. Recently, it's been introduced a concept of patient access schemes. This provide a mechanism for companies to reflect and come back to us with a new proposal and they have provided an extremely useful mechanism for us to act in that enabling role with companies.

Kate - When you reject a drug, there was a recent 90,000-pound breast cancer drug that was rejected and it sort of hit the headlines because there are a lot of patient groups who obviously feel like they need the drug and they get upset that it wouldn't be made available to them. Did you at NICE understand their position and why they're so desperate? Does it become very difficult for the people on the panels to make those decisions?

Carole - The people on those panels really do have probably one of the hardest jobs in public life. But what they really do have to do is to try to balance those needs of the individual with the needs of everybody who uses the NHS and to make sure that their judgments reflect to that balance as best they can.

Hannah - This week we've been talking about ethical issues in medicine and so far we'vebeen discussing the price of drugs.

But in recent years medicine is becoming more and more personalised, with drugs being adapted to our specific DNA codes.

所有这些敏感数据需要存储some people including Yaniv Erlich from MIT concerns about the safety and privacy of our genetic information as he explained to Kate Lamble

Yaniv - The genome is basically 3 billion letters that consist our DNA. This is the material that is inherited from our parents and basically represents our heritage. For most of the traits and the diseases that we know, there's a strong genetic component. But it's important to emphasise that for most of the diseases, the genome doesn't determine the trait it just increases the predispositions. By analysing genomes, we can understand this tendencies in the hope that in the future, we can suggest treatments based on the genetic makeup of the person, what is called personalised medicine.

Kate - So, you're concerned about the security of this genetic data. If I gave my genetic data to somebody, what would be the problem if someone identified me? I mean, I put lots of information on Facebook and Twitter, in the public domain about myself all the time. how would someone having my genetic information be different? What could they do with it?

Yaniv - The thing is that, it's a question of personal taste. Some people are really open about showing data about themselves. Other people have some concerns about their privacy. Some people are concerned that they might be discriminated based on their genetic makeup. So, our project was mainly to show that this can happen and to tell people that they should be aware of that.

Kate - Are there laws against it? As well as just protecting ourselves sort of by not sharing our data, are there laws being enacted to prevent this from happening in the future?

Yaniv - So, here in the US, we have GINA - the Genetic Information Non-discrimination Act. According to GINA, you cannot be discriminated in your workplace or by health insurance based on your genetic material. But GINA as of today doesn't protect you from discrimination by your life insurance company or long term care. So, it gives you some cover, but the blanket is not full. There are few services that you'll be denied based on your genetic makeup.

Kate - If I donated my genetic data or gave my genetic data to either research institute or to my doctor for some personalised medicine, they were going to anonymise that data, take my name off it. How could somebody then know that that data was mine?

Yaniv - Your genome is a strong identifier of yourself and I will tell you a little bit about our study. We focus on males. Now males get the Y-chromosome from their father and therefore, they got his Y-chromosome from his father. Now, in most western societies, males get their surnames from their fathers as well. So, this creates a correlation between the Y-chromosome and the surname. What we showed that you can take whole genome sequencing data that is apparently de-identified or anonymised and then by inspecting the Y-chromosome and searching it online genetic genealogy databases, you can find the surname of the individual. And then we considered if you know the age of the person and the geographical location. In most cases, you have this information as part of the metadata. So, we said, "Okay, if you have surname, you have the age, and you have the geographical region, you can really identify the person and get to this individual." We showed that in several examples that we can get to people that posted their genome anonymously on the web that we can identify them.

Kate - It amazes me that these genetic databases that you can use to identify somebody's surname and just lying around on the web. How did we get ourselves into a situation where that information is just out there?

Yaniv - Many people are interested about their heritage and about their ancestry. This databases created by the really vibrant community of genetic genealogists - by the way, I'm part of this community as well. They also put my Y-chromosome and my surname in these databases because I wanted to know more about my heritage. Now, the thing is that, if you contribute, it enabled people to identify all your patrilineal relatives.

Kate - So, if we want to protect this data and do more than just anonymise it, I mean, I share my banking details online to buy things on the internet through PayPal and things all the time. can we just use the same practices that they do to protect our genetic information?

Yaniv——因为当你莎尔略有不同e your bank information, what you're trying to protect is from a third party that will tap into the conversation or the online transaction. But the bank that you are communicating with sees all the information. So, we cannot use just the simple encryption methods, but there are new methods that are currently developed but I have to say that they're still in their infancy. In these methods, you could share genetic information. Let's say, we have some companies that try to interpret the information for you. And under these encryption methods called homomorphic encryption, the interpretation company, the company that tries to say what are the predispositions that you have, they don't really see the actual data. So, think about that you have a brick of gold and you want to go to a jewellery maker, but you don't really trust that jewellery maker. He might just take the brick of gold and run away. So, what you could do, you could take this brick of gold, place it in a glove box and put inside the glove box all the equipment that he needs to make the necklace. You lock that glove box with the best lock in the world and now, you give it to the jewellery maker. Now, the person has not interest of finding a way because he will never be able to break into the glove box and steal the gold brick, but he can still make the necklace for you. The same way this encryption method that you put your genetic information inside this mathematical glove box. Now, you give this glove box to the company. They know how to process this encrypted data and to derive the predispositions, but they don't see the actual results. They cannot just take them and run away. You get back this glove box, you open with your key, and now, you get these processed genetic information that you can do something with it. You can go to your physician or use it for other purposes.