Henrietta Lacks – a woman from a humble background who, in 1951, died of cervical cancer at the age of 31 – is heralded by members of the scientific and medical community for her great contribution to the medical field. However, Lacks was neither a scientist nor a medical expert.

It was, instead, the immortal HeLa cell line – harvested from Lacks’ cancer biopsy without her knowledge – that revolutionised medical research.

Revolutionising medicine with health data

While the controversial truth behind the HeLa cell line has raised questions about the ethical and legal implications of using an individual’s genetic material without permission, it also highlights the invaluable significance of medical information in the development of science.

Many people know of the importance of organ donation in saving lives, but as many are probably unaware that donating medical data can have an equally – if not more – transformative affect on healthcare. Without medical data, research in science and medicine cannot progress.

Just like how HeLa cells were used in the development of the polio vaccine, the analysis of large medical data sets have enabled scientists to prove the correlation between smoking and cancer, and have also allowed experts to debunk the unfounded association between MMR vaccines and autism.

It was discovered in a project by the British Heart Foundation that nearly half of all residents in the UK have heart failure – an epidemiological statistic that would not have been established without access to five million anonymous health records that are available in the General Practice Research Database.

But patient records do not only contribute to epidemiological studies. Lifestyle data – such as alcohol consumption, levels of exercise and calorie intake – which are accumulated by fitness trackers and apps, can be used by researchers to identify correlations of lifestyle habits with early signs of diseases. Likewise, scientists in the arena of personalised medicine can use genomic data to identify or tailor treatments for certain patients. Access to patient data can also allow for shorter, cheaper and more focused drug trials in the pharmaceutical cornerstone.

“Why shouldn’t you be able to give your DNA sequence, your diet, and your disease diagnoses to science while you’re alive? Unlike your organs, you can donate your data away and yet still keep it,” posited Michael Dirscoll, the CEO of Metamarkets.

Medical data beneficial to public – if handled with care

Although many healthcare professionals have access to electronic health records, privacy and security measures protect the confidentiality of patients’ information, and while many individuals are willing to participate in clinical trials and permit the sharing of their medical data for use in medical research, few would consider donating their personal data after they die.

Interestingly, while it is assumed that patient’s data is no longer accessible after their deaths, legislations in some countries actually allow researchers to access a deceased person’s medical information. In the UK, medical records remain confidential for 100 years after the individual’s death, but permission can be obtained from the Public Records Office for use of such data in research.

Experts from other countries, however, may face multiple hurdles in obtaining posthumous medical information as without informed consent by the patient, confidentiality such information cannot be suspended. As a result, researchers lose out on huge amounts of data that may have been imperative to the findings of their studies.

Yet, many people may still be hesitant and are unsure of sharing their information – posthumous or not.

While researchers intend to use such data for the benefit of science, improper handling of such private information may lead to accidental disclosure of confidential data and result in medical fraud. Additionally, the possibility of a breach in computerised systems may lead to unlawful retrieval of medical information – which is reportedly worth ten times more than credit card details in the black market.

Despite these potential risks, many efforts have been put forward to encourage the idea of data donation for the good of science, with multiple proposals for national databases of data donors and “Data Donor Card” schemes. The use of medical data will certainly accelerate the progress in biomedical and pharmaceutical research, and should not be left unexplored. MIMS

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Sources:
https://singularityhub.com/2017/02/16/our-health-data-can-save-lives-but-we-have-to-be-willing-to-share/
https://www.scientificamerican.com/article/why-you-should-donate-your-medical-data-when-you-die/
http://onlinelibrary.wiley.com/doi/10.15252/embr.201541802/full
https://gigaom.com/2011/12/16/why-you-yes-you-should-donate-your-medical-data/
https://www.newscientist.com/article/dn24979-give-the-gift-of-life-by-donating-your-medical-records/
http://www.biography.com/people/henrietta-lacks-21366671#synopsis