Paula Boddington

Personal Genome Project UK email disaster: If you can’t guarantee privacy, at least try to ensure trust

It’s not often that you can write on a topic in ethics whilst rolling around laughing, so I shall take this rare opportunity to make a few comments on the ludicrous breach of privacy that occurred last night when the Personal Genome Project messed up something as simple as an email list.

I’d expressed an interest in taking part in this project which aims to sequence the genomes of hundreds of thousands of people and make these available, together with trait information, to researchers. There are clear potential worries about privacy here, as there is a potential to identify individuals from such a rich source of information. Nonetheless, I was excited to take part. After all, many of the people I know and love the most would not be alive today were it not for advances in medical science which have helped to treat diseases such as cancer and type 1 diabetes. In the past, many have risked life and limb for medical science. What was the potential of a little breach of privacy to worry about? Besides which, there has been considerable attention to ethics, privacy, and security around this project. There’s a whole ethics crew. Presumably they only hire the crème de la crème of data and IT experts. Surely these guys could be trusted to use our information wisely, and to do all they could to prevent irresponsible use? Continue reading

Difficulties in assessing the risks of hydraulic fracturing and shale gas extraction: new study shows correlation between birth defects and proximity to gas wells in Colorado.

Natural gas extraction is associated with several known teratogens. A study published in the journal Environmental Health Perspectives on January 28th by researchers from the Colorado School of Public Health and the Department of Epidemiology of Brown University, USA, finds that for those babies born of mothers living with greater density of natural gas wells within a ten mile radius of their residence, there was an increase in congenital heart defects, and a possible link with increase in neural tube defects. 1
This is significant for current debates about the future of methods to extract shale gas inland in the UK, including the use of hydraulic fracturing (or fracking as it is more commonly known). Fracking involves a method for extracting natural gas from impermeable rocks deep within the earth by deep drilling, firstly vertically, then horizontally, and the injection of a mixture of water, sand and chemicals at high pressure into the wells to cause fissures into the rock (hydraulic fracturing) through which natural gas can escape up to the surface. The aim is that the fracturing will take place beneath the water table so that the water supply is not polluted by the mix of chemicals, methane gas and rock that are produced. The water sand and chemical mix that had been injected into the well is then partially recovered (it is never possible to recover all of it) and this waste fracking fluids, complete with fragments of rock from deep in the earth, must be disposed of. The technology requires that large numbers of wells are drilled in order to extract the gas, and requires the transportation of millions of gallons of water and chemicals to the drill, as well as some method of disposal of the waste. (The precise method of disposal for proposed UK fracking is not yet clear: in the States, evaporation pits are often used, but these are, for good reason, illegal in the EU.)
The debate about the safety of fracking is complex and it is important to tease apart some of the many points that may possibly muddy the debate. One of the difficulties is collating and assessing evidence of harm; another difficulty is in assessing how we extrapolate data of risks and benefits from one situation to another, when there may be variations in geography, geology, techniques used, chemicals used, regulations, and law. There is much to consider, so here I just discuss a couple of points to indicate how complex the debate is. One main lesson should be that simplistic assurances of lack of risk from fracking should be listened to with caution.

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Three person IVF

It was announced yesterday that the government is moving towards allowing so-called three person IVF for the creation of embryos free of mitochondrial disease.

The mitochondria are tiny organelles in the body of the cell, concerned with important energy functions, and which contain a small amount of DNA. They are present in the egg, but not in the sperm, and are passed down the female line, more or less unchanged, from mothers to all her offspring, and then from daughters to grandchildren and so on. In some cases, women can suffer from various mitochondrial disorders, which they are at risk of then passing on to their children. These disorders may be relatively mild, but in perhaps 5 – 10 cases a year in the UK, babies will be born with very serious disease.

There are a couple of ways of doing the new procedures, but basically the new proposed techniques take the egg of an affected woman and remove the nuclear DNA (the vast majority of our DNA which goes to shape our basic features). A donated egg is also taken, its nuclear DNA removed, leaving behind the healthy mitochondrial DNA. The nuclear DNA of the affected woman is then transplanted into the body of the healthy egg, resulting in an egg which has the DNA of the affected woman, minus the tiny fraction of mitochondrial DNA concerned with cell energy functions.

The Department of Health has backed this procedure after the HFEA conducted public consultations earlier this year; the HFEA reported broad public support for the techniques.  The Chief Medical Officer is now urging the drafting of regulations to allow the procedure to be approved by Parliament as soon as possible. There are hopes that the first patients could be treated as soon as 2014.

Mitochondrial disease can be really severe and lead to great suffering and early death. So why would there be any doubts about the use of such techniques?

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Thoughts on assisted suicide

There is another case in the news where someone is making a legal bid to allow his doctors help him to die. These cases are always heartrending. It’s a cliché that hard cases make bad law. But it’s a cliché because it’s true.

If we look at individual cases, there are often very strong grounds for considering that the compassionate response is to allow assisted suicide or euthanasia. But the difficulty is that  public policy and law must be designed to produce the best, the most just, the most compassionate outcome overall. This is why any legal or policy change must be made in response to a full consideration of all possible cases, and of wider effects upon society; there’s no such thing as simply allowing assisted suicide in law – any such law would have of course to be very carefully constructed.

And any law or policy is always enacted within a particular context; any choice for a freedom allowed within law is made within a particular context.

When we turn to examine the most compelling individual cases, there are certain things which stand out. One of these is the surrounding context of the patient’s request: often, full exploration of all medical options, a good relationship with a medical team, a loving family, years of careful thought. The request to die may be made carefully and for pressing reasons.

There is no doubt that there are serious conflicts surrounding this issue. If one were to summarise some of the main worries against making a change in law and policy to allow assisted suicide or euthanasia, these include concerns that some people will feel subtly pressurised to choose death over life. Arguments in favour of introducing new legislation quite rightly attempt to make provision to ensure that any choice of assisted suicide or euthanasia is freely chosen and autonomous.

But this then indicates that we need to do much more than consider legal changes. We need to ensure that any request to die is made in a social, psychological and economic context where there is equal value given to the choice to live. Here are some suggestions about what society needs to provide in order to provide a real choice for those suffering major illness or disability or nearing death.

·                State of the art palliative care, freely available to all. This therefore includes putting significant research funds into palliative care. Of course, this may not be a solution to all cases; but without such provision, the choice of euthanasia is surely to that extent made from a reduced list of options.

·                Careful consideration of the practice of medicine which often seems more focused on extending life without consideration of its quality. Many, although not all, requests for euthanasia arise because a patient’s life has been extended through the use of technology and medical care without regard to outcome for that patient. These are very difficult issues, of course, but they need to be carefully addressed.

·                A sea-change in attitudes towards the elderly, the sick and the disabled in society would not go amiss. There is not space here to do more than indicate the issues here, but a quick glance at how our elderly are valued should suffice – social isolation, poverty, enforced lack of economic and social productivity are the norm for many of our elderly. They are often seen as a group presenting nothing but problems and burdens to society. The message that our elders are a burden must be reduced, changed, or reversed – without this, we cannot be sure that the way such a group is seen does not influence decisions to choose euthanasia. There have been changes for the better in our attitude to people with disabilities in recent years. Let’s continue this and work to for changes in attitudes to the elderly, who have much to offer.    

·                Lastly, a persistent knot in my stomach tells me that it doesn’t seem very sensible to introduce a law allowing assisted suicide or euthanasia whilst we are in the midst of a recession and whilst the funding of the NHS is in such a precarious position. Maybe we should take care of the funding of health and social care first. Just a thought.