ASSISTED REPRODUCTIVE TECHNOLOGIES AND DATA PRIVACY
Introduction
Assisted Reproductive Technology (“ART”) refers to a diverse set of medical procedures designed to aid individuals or couples in achieving pregnancy when conventional methods are unsuccessful. This umbrella term encompasses various fertility treatments, including in vitro fertilization (IVF), intrauterine insemination (IUI), and gamete and embryo manipulation. ART procedures involve the manipulation of both male and female reproductive components to facilitate conception.
The dynamic landscape of data flows within the healthcare sector, notably in the realm of ART, demands a nuanced understanding of the complex interplay between privacy regulations and medical practices. In this context, the Information Technology (Reasonable Security Practices And Procedures And Sensitive Personal Data Or Information) Rules, 2011, play a pivotal role, designating health information as "sensitive personal data or information" and underscoring the importance of safeguarding individuals' privacy. This sensitivity is particularly pronounced in the ART sector, where an array of personal data, ranging from medical records to genetic information, is collected and processed. The recent Assisted Reproductive Technology (Regulation) Act, 2021, in conjunction with the Digital Personal Data Protection Act, 2023, establishes a framework for the regulation of ART clinics and banks, presenting a layered approach to data protection.
A note on data generated by ART
Data flows in any sector are scarcely uniform and often not easily classified under straight-jacket categories. Consequently, mapping and identifying data and its types become pivotal. It is believed that most data flows in the healthcare sector are highly sensitive and personal in nature, which may severely compromise the privacy and safety of an individual if breached. The Information Technology (Reasonable Security Practices And Procedures And Sensitive Personal Data Or Information) Rules, 2011 (“SPDI Rules”) categorizes any information pertaining to physical, physiological, mental conditions or medical records and history as “sensitive personal data or information”; this definition is broad enough to encompass any data collected by any ART facility or equipment. These include any information collected during the screening of patients, pertaining to ovulation and menstrual cycles, follicle and sperm count, ultrasound results, blood work etc. It also includes pre-implantation genetic testing on embryos to detect any genetic abnormality.
But data flows extend beyond mere medical procedures and technology. Health data also involves any medical procedures undertaken, the amount of medicine and drugs administered during any procedure, its resultant side effects, recovery etc. Any processing of the above-mentioned information, in turn, may generate more personal data points relating to an individual’s political affiliations, race, ethnicity, genetic data such as biometrics and DNA etc.; It is seen that different ethnicities and races react differently to the same/similar medication and have different propensities to genetic diseases. Further, it is to be noted that data is not only collected by professionals but also by intelligent equipment like AI which may be employed by any facility to render their service. Additionally, dissemination of information under exceptional circumstances (e.g. medical emergency) also affects how data may be classified. Considerations are further nuanced when the fundamental right to identity of a child conceived and born via ART may be in conflict with the fundamental right to privacy of a donor to remain anonymous.
Intersection of Privacy laws and ART laws:
In India, ART technology is regulated by the Assisted Reproductive Technology (Regulation) Act, 2021 (“ART Act”). With this, the Union aims to regulate and supervise assisted reproductive technology clinics and ART banks, prevent misuse and ensure safe and ethical practice of assisted reproductive technology services. When read with the Digital Personal Data Protection Act, 2023 (“DPDP Act”) and other ancillary guidelines, the two legislations provide some framework regulations for the digital privacy of health-based apps.
The ART Act establishes a National Assisted Reproductive Technology and Surrogacy Registry (“National Registry”) which acts as a central database for all clinics and banks and their nature of services. The Act also establishes a National Assisted Reproductive Technology and Surrogacy Board (“National Board”) under the Surrogacy Act to monitor the implementation of the act and advise the central government on policy matters. It also supervises the functioning of the National Registry, liaises with State Boards and curates a code of conduct for professionals working in ART clinics and banks. Under the DPDP Act, these bodies (i.e. National Board, State Board, ART clinics and banks) are most likely classified as data fiduciaries (primarily clinics and banks), data processors (these may include National Board and State boards) or an amalgamation of both (these include any appropriate authority established under the ART Act for investigation of complaints, suspend or cancellation of registration of clinics etc.) depending on the nature of work undertaken by them. If so classified, then the duties and liabilities of data fiduciaries and processors would necessarily apply to these bodies. As a result, all bodies would necessarily have to adopt Privacy Enhancing Technologies (PETs) and other organizational measures to ensure compliance with privacy laws in place. This may be considered one of the most critical considerations of any ART facility since any data collected by them would be sensitive personal data pertaining to health, regulated by the Information Technology (Reasonable Security Practices And Procedures And Sensitive Personal Data Or Information) Rules, 2011 (“SPDI Rules 2011”). These rules provide for how sensitive personal data or information are to be collected, handled and processed by anyone.
The ART Act independently also provides for the duties of ART clinics and banks in the country. ART clinics and banks are required to inform the commissioning couple/woman of all procedures undertaken and all costs, risks, advantages, and side effects of their selected procedure. It mandatorily ensures that all information collected by such clinics and banks to not informed to anyone except the database established by the National Registry or in cases of medical emergency or on order of court. Data collected by clinics and banks (these include details on donor oocytes, sperm or embryos used or unused) are required to be detailed and must be submitted to the National Registry online. ART banks are also required to collect personal information of donors including name, Aadhar number, address and any other details. By mandating online submission, the ART Act is harmonized with the DPDP Act, which regulates all digital personal data and emphasises free, informed consent.
Conclusion
With the increase in active opt-ins for ART, data privacy becomes a vital consideration for all healthcare facilities and professionals. Safeguard measures are not only required on a corporate level but also on a governmental level. It is to be noted that in the 262 Session of the Rajya Sabha, the Ministry of Electronics and Information Technology reported 165 data breach incidents involving citizen data from January 2018 to October 2023 from the Central Identities Data Repository despite publicly denying. This discovery puts into question the safety and integrity of data that may be submitted to the National Registry database, especially given the type of data (both personal and sensitive information) it aims to collate. At present the ART Act is well supported by the DPDP Act. However, further judicial and legislative deliberations are required to effectively regulate and balance the interests of all stakeholders.
References
- The Information Technology (Reasonable Security Practices And Procedures And Sensitive Personal Data Or Information) Rules, 2011
- Caring for Intimate Data in Fertility Technologies https://dl.acm.org/doi/pdf/10.1145/3411764.3445132
- Digital Personal Data Protection Act, 2023
- https://www.wolterskluwer.com/en/expert-insights/pharmacogenomics-and-race-can-heritage-affect-drug-disposition
Related Blogs
Introduction
As we delve deeper into the intricate, almost esoteric digital landscape of the 21st century, we are confronted by a new and troubling phenomenon that threatens the very bastions of our personal security. This is not a mere subplot in some dystopian novel but a harsh and palatable reality firmly rooted in today's technologically driven society. We must grapple with the consequences of the alarming evolution of cyber threats, particularly the sophisticated use of artificial intelligence in creating face swaps—a technique now cleverly harnessed by nefarious actors to undermine the bedrock of biometric security systems.
What is GoldPickaxe?
It was amidst the hum of countless servers and data centers that the term 'GoldPickaxe' began to echo, sending shivers down the spines of cybersecurity experts. Originating from the intricate web spun by a group of Chinese hackers as reported in Dark Reading. GoldPickaxe represents the latest in a long lineage of digital predators. It is an astute embodiment of the disguise, blending into the digital environment as a seemingly harmless government service app. But behind its innocuous facade, it bears the intent to ensnare and deceive, with the elderly demographic being especially susceptible to its trap.
Victims, unassuming and trustful, are cajoled into revealing their most sensitive information: phone numbers, private details, and, most alarmingly, their facial data. These virtual reflections, intended to be the safeguard of one's digital persona, are snatched away and misused in a perilous transformation. The attackers harness such biometric data, feeding it into the arcane furnaces of deepfake technology, wherein AI face-swapping crafts eerily accurate and deceptive facsimiles. These digital doppelgängers become the master keys, effortlessly bypassing the sentinel eyes of facial recognition systems that lock the vaults of Southeast Asia's financial institutions.
Through the diligent and unyielding work of the research team at Group-IB, the trajectory of one victim's harrowing ordeal—a Vietnamese individual pilfered of a life-altering $40,000—sheds light on the severity of this technological betrayal. The advancements in deep face technology, once seen as a marvel of AI, now present a clear and present danger, outpacing the mechanisms meant to deter unauthorized access, and leaving the unenlightened multitude unaware and exposed.
Adding weight to the discussion, experts, a potentate in biometric technology, commented with a somber tone: 'This is why we see face swaps as a tool of choice for hackers. It gives the threat actor this incredible level of power and control.' This chilling testament to the potency of digital fraudulence further emphasizes that even seemingly impregnable ecosystems, such as that of Apple’s, are not beyond the reach of these relentless invaders.
New Threat
Emerging from this landscape is the doppelgänger of GoldPickaxe specifically tailored for the iOS landscape—GoldDigger's mutation into GoldPickaxe for Apple's hallowed platform is nothing short of a wake-up call. It engenders not just a single threat but an evolving suite of menaces, including its uncanny offspring, 'GoldDiggerPlus,' which is wielding the terrifying power to piggyback on real-time communications of the affected devices. Continuously refined and updated, these threats become chimeras, each iteration more elusive, more formidable than its predecessor.
One ingenious and insidious tactic exploited by these cyber adversaries is the diversionary use of Apple's TestFlight, a trusted beta testing platform, as a trojan horse for their malware. Upon clampdown by Apple, the hackers, exhibiting an unsettling level of adaptability, inveigle users to endorse MDM profiles, hitherto reserved for corporate device management, thereby chaining these unknowing participants to their will.
How To Protect
Against this stark backdrop, the question of how one might armor oneself against such predation looms large. It is a question with no simple answer, demanding vigilance and proactive measures.
General Vigilance : Aware of the Trojan's advance, Apple is striving to devise countermeasures, yet individuals can take concrete steps to safeguard their digital lives.
Consider Lockdown Mode: It is imperative to exhibit discernment with TestFlight installations, to warily examine MDM profiles, and seriously consider embracing the protective embrace of Lockdown Mode. Activating Lockdown Mode on an iPhone is akin to drawing the portcullis and manning the battlements of one's digital stronghold. The process is straightforward: a journey to the settings menu, a descent into privacy and security, and finally, the sanctification of Lockdown Mode, followed by a device restart. It is a curtailment of convenience, yes, but a potent defense against the malevolence lurking in the unseen digital thicket.
As 'GoldPickaxe' insidiously carves its path into the iOS realm—a rare and unsettling occurrence—it flags the possible twilight of the iPhone's vaunted reputation for tight security. Should these shadow operators set their sights beyond Southeast Asia, angling their digital scalpels towards the U.S., Canada, and other English-speaking enclaves, the consequences could be dire.
Conclusion
Thus, it is imperative that as digital citizens, we fortify ourselves with best practices in cybersecurity. Our journey through cyberspace must be cautious, our digital trails deliberate and sparse. Let the specter of iPhone malware serve as a compelling reason to arm ourselves with knowledge and prudence, the twin guardians that will let us navigate the murky waters of the internet with assurance, outwitting those who weave webs of deceit. In heeding these words, we preserve not only our financial assets but the sanctity of our digital identities against the underhanded schemes of those who would see them usurped.
References
- https://www.timesnownews.com/technology-science/new-ios-malware-stealing-face-id-data-bank-infos-on-iphones-how-to-protect-yourself-article-107761568
- https://www.darkreading.com/application-security/ios-malware-steals-faces-defeat-biometrics-ai-swaps
- https://www.tomsguide.com/computing/malware-adware/first-ever-ios-trojan-discovered-and-its-stealing-face-id-data-to-break-into-bank-accounts
.webp)
Executive Summary:
A widely used news on social media is that a 3D model of Chanakya, supposedly made by Magadha DS University matches with MS Dhoni. However, fact-checking reveals that it is a 3D model of MS Dhoni not Chanakya. This MS Dhoni-3D model was created by artist Ankur Khatri and Magadha DS University does not appear to exist in the World. Khatri uploaded the model on ArtStation, calling it an MS Dhoni similarity study.
Claims:
The image being shared is claimed to be a 3D rendering of the ancient philosopher Chanakya created by Magadha DS University. However, people are noticing a striking similarity to the Indian cricketer MS Dhoni in the image.
Fact Check:
After receiving the post, we ran a reverse image search on the image. We landed on a Portfolio of a freelance character model named Ankur Khatri. We found the viral image over there and he gave a headline to the work as “MS Dhoni likeness study”. We also found some other character models in his portfolio.
Subsequently, we searched for the mentioned University which was named as Magadha DS University. But found no University with the same name, instead the name is Magadh University and it is located in Bodhgaya, Bihar. We searched the internet for any model, made by Magadh University but found nothing. The next step was to conduct an analysis on the Freelance Character artist profile, where we found that he has a dedicated Instagram channel where he posted a detailed video of his creative process that resulted in the MS Dhoni character model.
We concluded that the viral image is not a reconstruction of Indian philosopher Chanakya but a reconstruction of Cricketer MS Dhoni created by an artist named Ankur Khatri, not any University named Magadha DS.
Conclusion:
The viral claim that the 3D model is a recreation of the ancient philosopher Chanakya by a university called Magadha DS University is False and Misleading. In reality, the model is a digital artwork of former Indian cricket captain MS Dhoni, created by artist Ankur Khatri. There is no evidence of a Magadha DS University existence. There is a university named Magadh University in Bodh Gaya, Bihar despite its similar name, we found no evidence in the model's creation. Therefore, the claim is debunked, and the image is confirmed to be a depiction of MS Dhoni, not Chanakya.
Introduction
In the new age of technologies the internet and social media continue to witness a surge in deepfake videos a technological phenomenon that blurs the line between reality and fiction. The string of deepfake videos of Bollywood actors and other famous personalities has raised serious concerns. While Prime Minister Narendra Modi spoke against the risks of artificial intelligence at the G20 Virtual Summit. The central government has recently announced that it will soon set up dedicated regulations to tackle this Menace. This will include holding social media platforms and creators responsible for their actions against the rules and regulations. Very often most people shy away from initiating a legal process or taking action while being victims of misuse of fast-paced tech but the government has announced its big support to the victims and promised to stand by complaints against deepfake videos especially this includes helping individuals to report the incidents and any violations by platforms.
Social media platforms to realign their policies as per the Indian laws
The Ministry of Electronics and Information Technology (MeitY) announced on 24th November 2023 that it will be giving social media platforms seven days time period to align their terms of service and other policies with Indian laws and regulations in order to address the issue of hosting of deepfakes on these platforms. All platforms must align and transform their terms of use with their users to be consistent with the 12 areas that are prohibited under rule 3(1)(b) of the Information Technology (IT) Rules, 2021.
The platforms will ensure harmonization and alignment of their terms & policies so that every user on every platform is aware that when they use a platform the platform intends to be a safe and trusted platform and the platform will not tolerate these 12 types of content or information that have been prohibited under the IT Act and the IT rules. The government approach is to collectively advocate for responsible and safe use of the Internet. The government has taken a proactive step in partnership with these social media platforms to ensure an era where such platforms will be a lot more responsible and a lot more responsive to the expectations under the law and more compliant.
Officer to be appointed under rule 7
As Deepfake Videos continue to surface on social media, the Government has geared up to curb such content online. Mr. Rajeev Chandrasekhar Minister of State, (Meity), stated that the government will soon appoint an officer to take appropriate action against deepfake videos. This statement came after the government meeting with industry stakeholders and important players held on 24 Nov 2023. He added that Meity and the government of India will nominate an officer under rule 7 (IT rules 2021) and will ensure full compliance expectations from all the platforms. An officer appointed under Rule 7, will be entrusted with building a mechanism where users can put in their complaints regarding deepfakes and MeitY may also assist such aggrieved users with filing FIRs in such cases. Mr. Rajeev Chandrasekhar, Minister of State, (Meity) also added that we will also be creating a platform where it will be very easy for netizens to bring to the attention of the government of India and notices of allegations or reports of violation of law by the platforms and the rule 7 officer will take that digital platform information and respond accordingly.
The Information Technology (Intermediary Guidelines and Digital Media Ethics Code) Rules, 2021 (updated as on 6.4.2023)
Rule 3(1)(b) states that intermediaries shall inform its rules and regulations, privacy policy and user agreement to the user and shall make reasonable efforts to ‘restrict’ the users from hosting, displaying, uploading, modifying, publishing, transmitting, store, update or sharing any information that is prohibited under this rule which also includes deepfake, misinformation, CSAM(Child sexual abusive material) etc. As per rule 3(2)(b) Intermediaries shall remove or disable access within 24 hours of receipt of complaints of contents that expose the private areas of individuals, show such individuals in full or partial nudity or in a sexual act or is in the nature of impersonation including morphed images etc.
Ongoing Efforts Ahead of Crucial Meeting with Tech Giants
Ahead of the government meeting with online platforms such as Google, Facebook, and YouTube on Friday, 24th November 2023, Mr. Rajeev Chandrasekhar Minister of State, (Meity) added that way back from October 2022 the government of India had been alerting them to the threat of misinformation and deepfakes which are part of misinformation. He further added that the current IT rules under the IT Act provide for adequate compliance requirements on their part to deal with deepfake.
Deepfake Misinformation
Misinformation powered by AI becoming an even more potent force to disrupt and to mislead and to create chaos and confusion at a scale and of a type that is deeply detrimental. Deepfakes in a very simple basic way is misinformation which is powered by or enhanced by AI. Video-based deepfake misinformation is more dangerous since it has a greater reach as video consumption today is the preferred choice by users on the internet.
Way forward
The Honorable Prime Minister has raised the issue that deep fakes are deeply disruptive they can create divisions and all kinds of disruptions in communities, in families and therefore misuse of deepfake technology is a very clear present danger to the safe and trusted internet.
The Government is on its way to draft a dedicated legislation dedicated to tackling deepfakes.
Even as we speak to a future regulation and a future law which is certainly required given that our IT Act is 23 years old. However current IT rules provide for compliance requirements by the platforms on misinformation patently false information and deepfakes. Followed by the recent government advisory on misinformation and deepfake.
Conclusion
Prime Minister alerting of the dangers of deepfakes online. The government is now in the process of starting to look very seriously into this issue and also issued guidelines for intermediaries and in a finite period of time it is hoped that the threat of deep fakes would actually no longer exist in in our system. The government made it clear that apart from people spreading deepfake videos, the platforms making them spread and not taking action will also be liable they are currently liable and will be even more so in future after new rules and regulations are brought in.
References:
- https://www.moneycontrol.com/news/technology/deepfakes-meity-gives-social-media-platforms-7-day-ultimatum-to-align-their-policies-to-indian-laws-and-regulations-11805521.html
- https://www.azbpartners.com/bank/amendments-to-the-information-technology-intermediary-guidelines-and-digital-media-ethics-code-rules-2021/#:~:text=Prior%20to%20the%20amendment%2C%20under%20Rule%203(1)
- https://www.drishtiias.com/daily-updates/daily-news-analysis/amendments-to-the-it-rules-2021
- https://youtu.be/zmI2ml1d_Es?feature=shared
- https://pib.gov.in/PressReleaseIframePage.aspx?PRID=1975445
