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
Targeting airlines and airports, airline hoax threats are fabricated alarms which intend to disrupt normal day-to-day activities and create panic among the public. Security of public settings is of utmost importance, making them a vulnerable target. The consequences of such threats include the financial loss incurred by parties concerned, increased security protocols to be followed immediately after and in preparation, flight delays and diversions, emergency landings and passenger inconvenience and emotional distress. The motivation behind such threats is malicious intent of varying degrees, breaching national security, integrity and safety. However, apart from the government, airline and social media authorities which already have certain measures in place to tackle such issues, the public, through responsible consumption and verified sharing has an equal role in preventing the spread of misinformation and panic regarding the same.
Hoax Airline Threats
The recent spate of bomb hoax threats to Indian airlines has witnessed false reports about threats to (over) 500 flights since 14/10/2024, the majority being traced to posts on social media handles which are either anonymous or unverified. Some recent incidents include a hoax threat on Air India's flights from Delhi to Mumbai via Indore which was posted on X, 30/10/2024 and a flight from Nepal (Kathmandu) to Delhi on November 2nd, 2024.
As per reports by the Indian Express, steps are being taken to address such incidents by tweaking the assessment criteria for threats (regarding bombs) and authorities such as the Bomb Threat Assessment Committees (BTAC) are being selective in categorising them as specific and non-specific. Some other consideration factors include whether a VIP is onboard and whether the threat has been posted from an anonymous account with a similar history.
CyberPeace Recommendations
- For Public
- Question sensational information: The public should scrutinise the information they’re consuming not only to keep themselves safe but also to be responsible to other citizens. Exercise caution before sharing alarming messages, posts and pieces of information
- Recognising credible sources: Rely only on trustworthy, verified sources when sharing information, especially when it comes to topics as serious as airline safety.
- Avoiding Reactionary Sharing: Sharing in a state of panic can contribute to the chaos created upon receiving unverified news, hence, it is suggested to refrain from reactionary sharing.
- For the Authorities & Agencies
- After a series of hoax bomb threats, the Government of India has issued an advisory to social media platforms calling for them to make efforts for the removal of such malicious content. Adherence to obligations such as the prompt removal of harmful content or disabling access to such unlawful information has been specified under the IT Rules, 2021. They are also obligated under the Bhartiya Nagarik Suraksha Sanhita 2023 to report certain offences on their platform. The Ministry of Civil Aviation’s action plan consists of plans regarding hoax bomb threats being labelled as a cognisable offence, and attracting a no-flyers list as a penalty, among other things.
These plans also include steps such as :
- Introduction of other corrective measures that are to be taken against bad actors (similar to having a non-flyers list).
- Introduction of a reporting mechanism which is specific to such threats.
- Focus on promoting awareness, digital literacy and critical thinking, fact-checking resources as well as encouraging the public to report such hoaxes
Conclusion
Preventing the spread of airline threat hoaxes is a collective responsibility which involves public engagement and ownership to strengthen safety measures and build upon the trust in the overall safety ecosystem (here; airline agencies, government authorities and the public). As the government and agencies take measures to prevent such instances, the public should continue to share information only from and on verified and trusted portals. It is encouraged that the public must remain vigilant and responsible while consuming and sharing information.
References
- https://indianexpress.com/article/business/flight-bomb-threats-assessment-criteria-serious-9646397/
- https://www.wionews.com/world/indian-airline-flight-bound-for-new-delhi-from-nepal-receives-hoax-bomb-threat-amid-rise-in-similar-incidents-772795
- https://www.newindianexpress.com/nation/2024/Oct/26/centre-cautions-social-media-platforms-to-tackle-misinformation-after-hoax-bomb-threat-to-multiple-airlines
- https://economictimes.indiatimes.com/industry/transportation/airlines-/-aviation/amid-rising-hoax-bomb-threats-to-indian-airlines-centre-issues-advisory-to-social-media-companies/articleshow/114624187.cms
Executive Summary:
A morphed video of the actor Anup Soni popular on social media promoting IPL betting Telegram channel is found to be fake. The audio in the morphed video is produced through AI voice cloning. AI manipulation was identified by AI detection tools and deepfake analysis tools. In the original footage Mr Soni explains a case of crime, a part of the popular show Crime Patrol which is unrelated to betting. Therefore, it is important to draw the conclusion that Anup Soni is in no way associated with the betting channel.
Claims:
The facebook post claims the IPL betting Telegram channel which belongs to Rohit Khattar is promoted by Actor Anup Soni.
Fact Check:
Upon receiving the post, the CyberPeace Research Team closely analyzed the video and found major discrepancies which are mostly seen in AI-manipulated videos. The lip sync of the video does not match the audio. Taking a cue from this we analyzed using a Deepfake detection tool by True Media. It is found that the voice of the video is 100% AI-generated.
We then extracted the audio and checked in an audio Deepfake detection tool named Hive Moderation. Hive moderation found the audio to be 99.9% AI-Generated.
We then divided the video into keyframes and reverse searched one of the keyframes and found the original video uploaded by the YouTube channel named LIV Crime.
Upon analyzing we found that in the 3:18 time frame the video was edited, and altered with an AI voice.
Hence, the viral video is an AI manipulated video and it’s not real. We have previously debunked such AI voice manipulation with different celebrities and politicians to misrepresent the actual context. Netizens must be careful while believing in such AI manipulation videos.
Conclusion:
In conclusion, the viral video claiming that IPL betting Telegram channel promotion by actor Anup Soni is false. The video has been manipulated using AI voice cloning technology, as confirmed by both the Hive Moderation AI detector and the True Media AI detection tool. Therefore, the claim is baseless and misleading.
- Claim: An IPL betting Telegram channel belonging to Rohit Khattar promoted by Actor Anup Soni.
- Claimed on: Facebook
- Fact Check: Fake & Misleading
Introduction
To combat the problem of annoying calls and SMS, telecom regulator TRAI has urged service providers to create a uniform digital platform in two months that will allow them to request, maintain, and withdraw customers’ approval for promotional calls and messages. In the initial stage, only subscribers will be able to initiate the process of registering their consent to receive promotional calls and SMS, and later, business entities will be able to contact customers to seek their consent to receive promotional messages, according to a statement issued by the Telecom Regulatory Authority of India (TRAI) on Saturday.
TRAI Directs Telecom Providers to Set Up Digital Platform
TRAI has now directed all access providers to develop and deploy the Digital Consent Acquisition (DCA) facility for creating a unified platform and process to digitally register customers’ consent across all service providers and principal entities. Consent is received and maintained under the current system by several key entities such as banks, other financial institutions, insurance firms, trading companies, business entities, real estate businesses, and so on.
The purpose, scope of consent, and the principal entity or brand name shall be clearly mentioned in the consent-seeking message sent over the short code,” according to the statement.
It stated that only approved online or app links, call-back numbers, and so on will be permitted to be used in consent-seeking communications.
TRAI issued guidelines to guarantee that all voice-based Telemarketers are brought under a single Distributed ledger technology (DLT) platform for more efficient monitoring of nuisance calls and unwanted communications. It also instructs operators to actively deploy AI/ML-based anti-phishing systems as well as to integrate tech solutions on the DLT platform to deal with malicious calls and texts.
TRAI has issued two separate Directions to Access Service Providers under TCCCPR-2018 (Telecom Commercial Communications Customer Preference Regulations) to ensure that all promotional messages are sent through Registered Telemarketers (RTMs) using approved Headers and Message Templates on Distributed Ledger Technologies (DLT) platform, and to stop misuse of Headers and Message Templates,” the regulator said in a statement.
Users can already block telemarketing calls and texts by texting 1909 from their registered mobile number. By dialing 1909, customers can opt out of getting advertising calls by activating the do not disturb (DND) feature.
Telecom providers operate DLT platforms, and businesses involved in sending bulk promotional or transactional SMS must register by providing their company information, including sender IDs and SMS templates.
According to the instructions, telecom companies will send consent-seeking messages using the common short code 127. The goal, extent of consent, and primary entity/brand name must be clearly stated in the consent-seeking message delivered via the shortcode.
TRAI stated that only whitelisted URLs/APKs (Android package kits file format)/OTT links/call back numbers, etc., shall be used in consent-seeking messages.
Telcos must “ensure that promotional messages are not transmitted by unregistered telemarketers or telemarketers using telephone numbers (10 digits numbers).” Telecom providers have been urged to act against all erring telemarketers in accordance with the applicable regulations and legal requirements.
Users can, however, refuse to receive any consent-seeking messages launched by any significant Telcos have been urged to create an SMS/IVR (interactive voice response)/online service for this purpose.
According to TRAI’s timeline, the consent-taking process by primary companies will begin on September 1.According to a nationwide survey conducted by a local circle, 66% of mobile users continue to receive three or more bothersome calls per day, the majority of which originate from personal cell numbers.
There are scams surfacing on the internet with new types of scams, like WhatsApp international call scams. The latest scam is targeting Delhi police, the scammers pretend to be police officials of Delhi and ask for the personal details of the users and the calling them from a 9-digit number.
A recent scam
A Twitter user reported receiving an automated call from +91 96681 9555, stating, “This call is from Delhi Police.” It went on to ask her to stay in the queue since some of her documents needed to be picked up. Then he said he is a sub-inspector at New Delhi’s Kirti Nagar police station. He then questioned if she had lately misplaced her Aadhaar card, PAN card, or ATM card, to which she replied ‘no’. The fraudster then claims to be a cop and asks her to validate the final four digits of her card because they have discovered a card with her name on it. And so many other people tweeted about this.
The scams are constantly increasing as earlier these scammers asked for account details and claimed to be Delhi police and used 9-digit numbers for scamming people.
TRAI’s new guidelines regarding the consent to receive any promotional calls and messages to telecommunication providers will be able to curb the scams.
The e- KYC is an essential requirement as e-KYC offers a more secure identity verification process in an increasingly digital age that uses biometric technologies to provide quick results.
Conclusion
The aim is to prevent unwanted calls and communications sent to customers via digital methods without their permission. Once this platform is implemented, an organization can only send promotional calls or messages with the customer’s explicit approval. Companies use a variety of methods to notify clients about their products, including phone calls, text messages, emails, and social media. Customers, however, are constantly assaulted with the same calls and messages as a result of this practice. With the constant increase in scams, the new guideline of TRAI will also curb the calling of Scams. digital KYC prevents SIM fraud and offers a more secure identity verification method.
