Transparency in Genetic Medicine


Transparency in Genetic Medicine - Authors opting for open peer review at Royal Society Open ScienceTransparency is the focus of this year’s Peer Review Week. Peer review is the process by which research is reviewed by experts in the field before being published in academic journals. Traditionally these expert reviews have not been available for people to read and the reviewers were anonymous. In recent years a movement towards bringing more transparency to the peer review process has been gaining momentum. Increasingly, journals are publishing reviews, and who wrote them, alongside the research.

I am a strong supporter of the drive to bring more transparency to academic publishing. But a review by the Royal Society suggested that Genetics is lagging behind the pack, as shown in the image above. This surprised and disappointed me. It also got me thinking about transparency in other areas of genetic medicine. How are we doing? What do we need to do?

 

What is Transparency?

Transparency implies openness, communication and accountability.

Wikipedia has a good definition of transparency as used in this context: “Transparency, as used in science, engineering, business, the humanities and in other social contexts, implies openness, communication and accountability.”  I particularly like the explicit inclusion of accountability in this definition.

We can also define transparency practically as “operating in such a way that it is easy for others to see what actions are performed“.

Written like this, it is difficult to see why anyone would, or could, argue against transparency in medicine.

 

Too many black boxes

I suspect there is near-universal support for transparency to be at the heart of genetic medicine. Many in the field probably feel it is already core to what they do. But the reality does not support this. At every step of genetic medicine there are black boxes – processes whose internal workings are not explained. For example, it is often difficult or impossible to pin down the genetic testing eligibility criteria used. You would also have a hard time making an informed decision about which lab you should ask to do a genetic test, unless you are only interested in price and turnaround time. The most basic information about what, why and how well the test performs is rarely easily obtainable.

 

Providing transparency is hard

So we all believe in the philosophy of transparency but we are all having difficulty delivering it. Why? Well because it’s hard. Being transparent is very hard. It takes a lot of time, and a surprising amount of brainpower, to make it easy for people to see what actions have been performed. First we have to fully understand ourselves what we are doing. This is not a given, even for processes we have been doing for years! Then we have to present that information so others also understand it.

And we make things harder for ourselves. We want to be transparent, but we want to be sure things are perfect first, with all the loose ends tied, all the ambiguities pinned down. We don’t want to feel exposed or vulnerable to harsh judgements about our actions and choices. And so much of what we do is in a cycle of constant improvement so we can tell ourselves that we will be transparent when it is finished. But it is never finished.

 

Transparency has many benefits

There are two main reasons given for being transparent: to fulfill one’s responsibilities and to be helpful to others. The personal benefits are rarely mentioned and widely under-appreciated. My group strives to be transparent, and we do quite well in many areas, less well in others. Our decision to be purposeful about transparency was initially based on ideology. I knew it would involve a lot of extra work for us but I thought it was our responsibility. Now my reasons are much broader, with a strong emphasis on the benefits it has for ourselves. Being transparent is a win-win. It helps us and it helps us fulfill our responsibilities.

Our Clinical Cancer Genetic protocols exemplify this win-win. I wanted us to be transparent about who was eligible for appointments, testing, surveillance etc. And to make the information freely available on the internet. It can genuinely be hard to decide and formalise this type of activity. And it is very hard to present it in an easily understandable way. It took us about two years to hone the process.

But the rewards have been far greater than we imagined. Many other centres around the world have found our protocols useful, which is pleasing. But more importantly, many have become collaborators in various endeavours. We also found we no longer needed a separate weekly two-hour meeting to discuss cases where people were unclear what to do, because the protocols address >95% of scenarios. On a personal level, I go straight to the web if I want to check our current practice, rather than scrambling around files on my computer, emailing someone or picking-up the phone, as I used to. It saves me a lot of time!

 

How can we improve transparency?

We must, first and foremost, incentivise the culture of transparency, using all means available. Regulations and standards will certainly have a place, but are not easily applicable to all aspects of genetic medicine. So social proof, wanting to be transparent, will be essential. As a field we need to collectively think about how to be transparent, effectively and efficiently. So that we feel comfortable sharing what we do, even though it’s not perfect, even though it is a work in progress, even though it takes time and effort.

If we do this, we will likely soon find that we will want to be more transparent. Because in the long-run it saves us time and effort, improves our own practice and helps deliver the progress we need.

 

 

Image source: the Royal Society publishing blog.

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