On Independence Day 2020, the Prime Minister announced a plan in his speech regarding the development of a nation-wide health ID programme to guarantee that every Indian would be counted by the National Digital Health Mission. On 26 August 2020, the Health Ministry announced a draft policy regarding healthcare data.
Originally the government offered very little time for comments, feedback and suggestions regarding the draft policy. This caused a blowback from many in the health sector saying that this was a serious matter which requires proper deliberation under normal circumstances, and during the COVID-19 pandemic, the health sector is overburdened. Feedback would hence be limited.
On reading, the policy appears to be a gateway to the telemedicine industry. While India has a Data Privacy Bill, it is not clear where medical data falls, and whether the current law can adequately handle the specific legal challenges that health data throws up. For example, in cases where a person is unconscious, or is a child, or otherwise incapacitated, they cannot provide consent. The current policy seeks to address those challenges and make the law surrounding medical data, its use and its transfer clearer.
The policy is a step towards the commodification of health data. It creates a framework allowing for informed consent regarding the use and movement of data and provides contingencies when a person cannot provide consent. The policy is weak on redressal mechanism, meaning that if someone’s privacy is abused, it would be difficult for that person to get justice. At a time when data can move quickly and easily without the person involved being aware, this is a deep concern.
4. Right to Privacy & Health as Property
Many groups have tried to raise this issue as one of privacy, but it strikes at a deeper level. To begin, there is a difference between what belongs to you, and what your property is. Your property can be bought, sold, and transferred. There are things that belong to you but cannot be bought, sold, or transferred. Our lives, bodies, relationships, and identities belong to us, but the rights to them cannot be bought, sold or otherwise transferred. If they could, we would be legalizing bonded labour and slavery.
The right to privacy might cover data that is so closely linked with our bodies, but the exact line around that right is murky. Our health data are extensions of our body. They make no sense without some reference to our body. This data is also only profitable to us, as it helps us maintain better health, but does not directly give us any monetary profit.
As individuals, we cannot profit off of our health data, but there are three ways our data can be profited off of. First, Health insurance companies can use our data to determine insurance rates. In a way, our visits to hospitals can be used against us to justify higher rates, as each visit gives them more information about the state of our health.
Second, data companies have learnt new ways, using new technologies to analyze health data. The linking of the Health ID to the Adhaar card or other national databases gives these firms a comprehensive database to profit off of our hospital visits.
Third, there has been a growing industry of telemedicine which tries to bypass the traditional hospitals and diagnose and prescribe treatment remotely.
