By Hiya Chowdhary, a student at Maharashtra National Law University, Nagpur
Abstract
The rapid advancements in the field of neurotechnologies has ushered a new era of exploration in the human mind. These technologies encompass as wide range of system used for monitoring, recording and interpreting brain activity and opens up an arena of opportunity in the fields ranging from medicine, consumer market, criminal justice, military, etc. the application of neurotechnologies are vast ranging from Brain–Computer Interface to even shopping. However, as much as a blessing, neurotechnologies pose severe ethical and moral questions especially regarding data privacy, thus giving rise to the need of the concept of ‘neurorights’. This paper aims to explore the evolving discourse on neurorights, focusing on the ethical and legal considerations surrounding individuals’ control over their minds and thoughts. Drawing on insights from scholars and policymakers, proposed frameworks for neurorights have been examined.
Neurotechnology and Brain Data Privacy
“Neurotechnology” is a broad term generally used to describe a variety of technological systems that either monitor or regulate brain activity. Apart from their use in medicine, Neurotechnologies have applications in various sectors, including the consumer market (such as using Brain-Computer Interfaces for gaming, education, or meditation), criminal justice, etc.
Neurological advancements have progressed as much as to be able to record and analyse data from people’s brain via brain stimulation. It is used today in the field of medicine to treat people with severe or untreatable diseases like epilepsy and depression. Doctors can figure out the exact part of the brain where the problem arises and can thus make necessary interventions. Brain stimulation can also help people with Parkinson’s disease or obsessive – compulsive disorder that doesn’t respond to medication. Various devices can now either be attached to the brain or inserted deep in the skull using invasive technologies like electrodes. AI based tools are now being used to analyse the data being collected from these devices.
Research in neuroscience yields brain data, which encompasses information obtained through direct observation of the brain. This data not only contributes to progress in neuroscience research but also facilitates the creation of sophisticated datasets. However, these data are prone to be used against an individual which could violate an individual’s privacy. The case of Ross Compton, whose own heart data was taken against him to prove his involvement in burning his house down, could be considered as an example in this regards. He claimed that he woke up in the middle of the night due to his house being set on fire and escaped via a window with a few belongings. The authorities on the other hand had suspicions and issued search warrant that made it possible to seize data collected by pacemaker.
Similarly, data can be taken from these devices and could easily be used against anyone.
Understanding Neuro Rights
Neurorights, in broader sense could be understood as new human rights that seek protection of an individual’s control over his or her mind and thoughts. Over the course of time, different ideas regarding to the rights and scope of protection has been proposed by various neurologists, philosophers, jurists, etc. as the debate on Neurorights is of an interdisciplinary nature.
Professor Yuste et al identified four ethical priorities that new human rights i.e. Neurorights should cover: privacy, augmentation, algorithmic bias and identity or agency. However, Yuste et al, did not elaborate on their scope in their paper. This idea was elaborated by Marcello Ienca and Roberto Andorno who proposed four new human rights that partly overlap with the four ethical priorities identified by Yuste et al. in their paper. They vouched for introduction of a right to mental privacy, a right to mental integrity, a right to psychological continuity and a right to cognitive liberty. They however did not specify whether these rights are absolute or not.
- The right to mental privacy, as proposed by the authors, would protect “private or sensitive information in a person’s mind from unauthorized collection, storage, use or even deletion”. That means that it would protect the information before it could take a material form in written, spoken or expressed. Thus it would also protect the source and provide better protection than existing privacy laws.
- The right to mental injury means protection from all “unauthorized intrusions”. This is already imbibed in the jurisprudence of European Courts of Human Rights (ECtHR) in Art.3. however, it covers only partly and therefore needs reconceptualization.
- Right to psychological continuity aims to protect “the mental substrates of personal identity from unconscious and unconsented alteration by third parties through the use of invasive or non-invasive neurotechnology”. The ECtHR developed right to identity on this jurisprudence in Article 8. Here, privacy and identity should be distinguished.
- Right to psychological continuity aims to prevent the alteration to neural functioning not just access to brain data.
- The current personality rights do not sufficiently protect the identity because they focus on actions or expressions of that identity whereas “psychological continuity guarantees protection at an antecedent level”. This might overlap with right to mental integrity but it does not require mental or neural harm. thus, measures are needed to safeguard individuals against imperceptible interventions such as neuromarketing, micro-targeting, or nudging, which seek to bypass people’s rational defences against manipulation.
- The other proposed right is the right to cognitive liberty, which, in its negative dimension, aims to protect the individual from coercive and unconsented use of neurotechnology.
Various other scholars propose only one new human right. An example would be Andrea Lavazza who argues in favour of the introduction of a right to mental integrity. The right should protect the “individual’s mastery of his mental state and his brain data so that, without his consent, no one can read, spread or alter such states and data in order to condition the individual in a way”. The concept of the right to mental integrity extends beyond merely protecting against intrusions and encompasses privacy and self-determination. Therefore, the suggested scope of this right is more comprehensive compared to the right to mental integrity proposed by Ienca and Andorno.
the legal debate on Neurorights witness conceptualizations offered by Jan Christoph Bublitz and Nita A Farahany that favour the introduction of only one new human right: the right to mental self- determination or the right to cognitive liberty both of which have not been conceptualized as an absolute right. Bublitz proposes a comprehensive right to mental self-determination, encompassing freedom from external influences, protection against interference, privacy, and freedom from negative sanctions for thoughts. This right combines elements of existing rights and offers broader protection. Additionally, the right to cognitive liberty emphasizes individual agency over mental development, excluding privacy concerns.
These scholars agree that existing human rights partially address this issue however there is no legal clarity and the protection currently offered is insufficient. This forms the basis of their demand for new human rights.
Ethical Considerations in Protecting Brain Data Privacy
Neurotechnologies have often been criticised for its effects on human rights as neurotechnologies provide the capabilities to a) access an individual’s mental states, b) verify subjective reports regarding the nature and content of such mental states, c) contest first person authority regarding mental states and d) control decoded mental states by providing input behaviourally or through direct brain stimulation.
A basic though yet not commonly applicable ethical; concern could be the possibility of police using brain – reading neurotechnology to make inferences about the suspects’ mental state in order to investigate. Decoding of brain data may reveal an individual’s sexual preferences or political orientation, which might lead to discrimination and prejudicial treatment. Having data on any person’s emotions may make it easier for another person to control or manipulate him. In some cases like unauthorized modification of a person’s mental state may qualify as a violation of not only mental integrity but also of cognitive liberty. Such scenarios give rise to questions of mental privacy, cognitive liberty, and mental integrity,
Potential Threats to Brain Data Privacy
Neuroscience data combined with personal information such as diagnosis of a disorder, sharing and reprocessing of data can cause unwanted disclosure of sensitive information. Information about neural recording or neuroimaging can give away information bout a person’s cognitive and affective states. According to various studies, neuroscience data can also be made basis for future prediction for example the potential risk of developing a neurological disorder (Parkinson’s, Alzheimer’s disease etc.). It could also be used to assess predisposition to be inclined towards criminal behaviour. This raises serious concerns as it could be used to discriminate between people based on such information against people.
Neuroscience data are specifically more sensitive compared to other personal or health data due to it being more intimate in nature. It is important to one’s identity and has more of a philosophical and moral importance. They uncover one’s thoughts and unfiltered tendencies and subconscious biases. This data can incriminate mental privacy or freedom of thought as they could be used to decode thoughts in the brain. The tools capable of brain reading can access personal information such as thoughts, judgement, desires, etc. which an individual could never manifest externally. In the present day context, communication neurotechnology is used for identifying and analysing neural signals to produce intelligible speech, writing, or typing.
Legal Frameworks for Protecting Brain Data Privacy
In order to address these concerns, various policies and regulations have been proposed neuroscience data and neuro rights. The governments of Chile and Spain have been working on integrating the issue of neuro rights into their constitutions and the American approaches have focused more on controlling access and non-disclosure of neuroscience data which includes requirement of informed consent for data sharing, imposing strict limitations on data access, integrating strict data protections such as data encryption or de-identification of data and creating new human rights to protect mental privacy.
While these measures would help strengthen existing data protection laws and address the concern of data privacy, excessive restriction on sharing and access could be detrimental to scientific and open science practice in this field. The policies as proposed under American laws focus on neuroscience data collection in commercial domain. however, such data provisions seem to often confuse the difference between collection of such data for research and clinical purposes and commercial data due to lack of proper expression. Therefore, these differences should be explicitly addressed in these policies and distinction should be drawn to avert the harmful effects on research. legal prohibition of harmful use of such data could prove as a safeguard against privacy risks related with neuroscience data and on the same hand would also pave way towards protecting individuals without hampering scientific research and limiting benefits of open science practice in neuroscience.
Individuals should be fully aware of the collection and processing of the data and such consent should specifically include consent about the information being collected from them and the collector agency/ institution, the time duration and the purpose of collection. It should also include potential risks and the security measures used to protect the data. Commercial sharing and sale of neuroscience data should be limited. Additional procedures should be put into use to de-identify neuroscience data.
Any policy created in order to address these concerns should widen its ambit to address privacy risks of data and its potential harm rather than simply protecting data. More harm could be done from use of neuroscience data or any kind of information inferred from such data with a malicious intention as such data could easily be used to discriminate against an individual. Hence, such policies should, along with focusing on controlling access also pay attention to reduce the opportunity to use neuroscience data with an intention to cause harm.
Conclusion
The rise of neurotechnology has brought both exciting opportunities and daunting ethical challenges. The concept of neurorights as discussed by Yuste, Ienca and Andorno, Bublitz and Farahany strive for protecting people’s thoughts and mind control. However, what these rights cover and how they can be enforced is still not clear. Worries concerning privacy issues on brain data include unauthorized access to such information as well as the discriminatory application of the same necessitate strong legal frameworks. Some countries are working towards incorporating neuro rights into legislation but balancing between individual rights and scientific advancement still needs to be focused on as the lines between them often get blurry.
Going forward, policymakers need to cooperate with researchers and ethicists so that they may develop smart methods that prioritize innovations alongside ethical principles. This allows societies to deal with challenges posed by neurotechnologies while protecting basic human rights and values through promoting transparency; informed consent; responsible data practices.
References
- Jessica Hamelzou, “How your brain data could be used against you”, MIT Technology Review, https://www.technologyreview.com/2023/02/24/1069116/how-your-brain-data-could-be-used-against-you/, (visited on April 2, 2024).
- Anita S. Jwa and Russell A. Poldrack, “Addressing privacy risk in neuroscience data: from data protection to harm prevention”, Journal of Law and the Biosciences, 1–25 https://doi.org/10.1093/jlb/lsac025.
- Nora Hertz, “Neurorights – Do we Need New Human Rights? A Reconsideration of the Right to Freedom of Thought”, Neuroethics (2023) 16:5 https://doi.org/10.1007/s12152-022-09511-0.
- Paschal Ochang, Bernd Carsten Stahl, Damian Eke (2022), “The ethical and legal landscape of brain data governance”, PLoS ONE 17(12): e0273473. https:// doi.org/10.1371/journal.pone.0273473.
- Sjors Ligthart, Marcello Ienca, Gerben Meynen, et al, “Minding Rights: Mapping Ethical and Legal Foundations of ‘Neurorights”, Cambridge Quarterly of Healthcare Ethics (2023), 32: 4, 461–481 doi:10.1017/S0963180123000245.
