Science has always battled with the question of nature vs nurture. Is it your genes which create you or is it your environment? The answer, unfortunately, is not so binary. Both play a crucial role in determining who you are and the diseases you may experience, however, recent findings have shown that there is somewhat of a middle man, epigenetics.
Epigenetics is the disproof that genes are set in stone, it is the science of innate human biochemical mechanisms that silence specific genes when certain environmental factors are present.
It has always been challenging to make precise prognoses about certain diseases. This is due to a lack of concrete data from these three prongs which drive the creation of a person’s “medical history“.
The naughties may have produced the first generation of humans where the majority of their activity within a contextual environment is recorded electronically in some way. This in combination with ever more readily available genome sequencing will make this data invaluable to future clinicians when predicting disease.
A personal dataset of biometrics, social and genetic parameters, whilst useful could be larger to make stronger correlations and better clinical decisions. However, a personal dataset is limited by their own lifetime. A better diagnosis could occur if we had previous generations of data, the issue here is that our predecessor’s medical data is currently impossible to access.
The Succession of personal data
Although your social data can be bequeathed to anyone, Facebook offers a “Legacy Contact” option which allows a nominated individual to download your personal data (if you have this switched on) and Google offers an Inactive Account Manager. As of yet, you cannot bequeath your own medical data let alone acquire your predecessors.
“There can be no succession or bequeathing of one’s data, as stricto sensu, only property can be passed onto one’s next of kin and heirs. An option of deciding as to what happens to one’s patient records is not viable under the succession and probate regime at the moment either.”¹
The legal term for this is posthumous medical data donation (PMDD) and is often described legally as very similar to organ donation i.e. your medical data (MD) like your organs cannot be posthumously given away to a third party if there has not been prior given authority. Although unlike organs, which could be seen as cogs that fit into the general human-machine, medical data could not be more unique. Furthermore, if you look retrospectively from future generations, one person’s data set could be of huge value to a large amount of people.
As digital health progresses it is arguable that this data will become more valuable in the future. The aggregation of numerous sets of donated data would support advanced and personalised medical research, providing the basis for data mining, machine learning and AI, which would help generate new understanding of some of the acutest medical concerns that humanity is facing nowadays.
For instance, in the future, if you were in consultation with a clinician about your risks of getting a specific type of cancer, there would be a three-pronged approach:
- Genetic: your DNA could be sequenced to see if you have specific markers.
- Epigenetic: your family history of recorded activity could be pulled up to see if any previous generations were exposed to silencing factors.
- Environmental: your personal social history could be analysed to see if you have come across any factors which might silence certain genes.
The resulting prescription would almost be that of a sage telling you that to avoid a specific fate “you must stop eating those high vitamin A carrot sticks as snacks as you have a higher risk of… ” with an indication of a current possibility of getting the disease on your current trajectory.
How can we make this future a reality?
By starting now. Voyager Medical is working on a new system we have coined “Medical Information Asset Management Interface (MIAMI)” and is intended to help patients better own the medical data assets. The system can manage access to social, genetic and medical records in one place so that they can be handed down to the next generation. If you would like to get involved in the initial stages of this project please drop us a message.
References:
¹ Post-mortem privacy 2.0: theory, law, and technology. Edina Harbinja. Pages 26-42 | Published online: 22 Feb 2017. Accessed 5 May 2020 via: https://doi.org/10.1080/13600869.2017.1275116
² Posthumous Medical Data Donation: The Case for a Legal Framework. Published: 16 January 2019. Accessed 5 May 2020 via: https://link.springer.com/chapter/10.1007/978-3-030-04363-6_6
