Protection of the Research Participants Data

From a time when considering data privacy was an optional thought, to passing highly sensitive laws toward the protection of data — a lot has changed in this decade! Those days are definitely gone; for the good too.

But when it comes to data, what kind of details are we exactly talking about? From bank details to driving license to the e-identity of someone, one may think of several options but it's actually something else.

A lot of researchers do surveys in large quantities to understand how the human brain works. For that, they collect data of people in mass, and try to find the pattern behind them. 

The question is what happens to that data afterwards? Is it really safe to publically give out your information like that? 

In today's era, where people can use even the smallest of information towards you to create problems in your life. It's important that we stay away from trouble. 

No need to worry, and be anxious about what happens and start looking out for it. 

In this article, not only I'll tell you how things work in these scenarios, and what happens to the data afterwards. Worried? Keep reading to learn more. 

Why do we need privacy policies?

Before we move any step ahead, let me clear the doubt that, "Why do we need a data privacy policy?" 

There are several reasons to state the reason behind the need of a policy. It's not 80's that we ignore that everything in the world has shifted online. 

Here are 3 reasons why we need a strict data protection policy:

1. Independently audited:

It's crucial that tools that store client data comply with the standards of the sector in which your business operates. More significantly, these assertions should be independently verified through audits of the tools in question. For software as a service companies, they are quickly becoming the minimal need for security compliance.

2. Everyone shouldn't be able to see PII: 

Any information that may be used to identify a person through a Google search is one of the best definitions of Personally Identifiable Information (PII) that I've heard. It may also include a title, a location, or a firm name in addition to a name and an email address.

Given that criteria, it's critical to disclose just the information about a customer that is necessary for you to perform your duties. A product manager therefore probably doesn't need a last name or an email address in order to identify if someone is a suitable fit for their next research project, even though an admin may have access to everything.

3. Data makes research more personalised: 

Finding & hiring the proper participants is the first step in conducting great research. The problem arises when the list of customers' customer data that is required to segment them contains PII. There are ways to both secure PII and reach out to everyone with targeted research.

As you can see these 3 reasons make it super obvious how much of a problem data can be. Even if there are ways on how you can avoid all of these from happening. But, why go and seek a cure? when we can prevent it from happening as well.

How Govt. Is planning to improve Data Protection 

In January 2023, an announcement was made by NIH(National Institute of Health) about the new policy that'll be coming in hand. 

They released 2 simple guides which carried a wide variety of information around what shall be done, and by who. 

Here are some key points that will help you understand more about the policy: 

1. Recognize and respect tribal or cultural preferences. Before storing and exchanging data and biospecimens, consult the right stakeholders and leaders to understand the applicable laws, rules, and cultural preferences that need to be taken into account.

2. Be ready to update consent forms. Consider the consequences for re-identification, privacy, and confidentiality and update terminology as necessary when coding and de-identification technologies develop and capabilities for connecting disparate data get more sophisticated.

3. Take into account the expected study participants' reading abilities. The NIH advises aiming for a reading level of 8th grade. In addition, researchers may want to think about other content delivery strategies like instructional films.

4. Review the accepted community norms for genetic data consents. Investigators and institutions have access to a number of tools that offer guidelines for gathering, preserving, and exchanging genomic data and samples. The NIH Genomic Data Sharing Policy is one example of this.

These 4 points are the most basic yet important part of this policy. I hope this has helped you understand the policy more, and be prepared towards it. 

What happens to the data after the survey?

It starts with taking adequate consent toward data usage, and then following up with using that data for analysis and studying. 

The reason for collecting & studying the data is quite versatile. However, the question is,"When the person is done with the analysis & data studying, what happens to the data??

Let's understand this with the help of an example. For eg:

In an office, data of all the employees are taken to understand how processes are being managed in the office. 

After the form is filled, data is collected.  The authorised person studies the data, create a feedback report with it. The feedback report will carry all the necessary information that help in making an end decision. After the end decision is being made, what happens to the information? The possibilities are endless, and here are some of them:

1. Burned & shredding of the data. 

2. Data is being sold out to various companies to help them run targeted ads and infographics onto people over instagram and google.

3. Companies even store the recorded data for studying in the future. And, usually it has been done for at least 3-4 years. After that, a similar process is being followed and answers are being found. 

And, there are so many more reasons and ways on how someone can go by and keep your data. 

Final words

With the evolving era, where everything is digital. Data is our biggest asset and. Liability. However, all researchers' primary concern should be the safeguarding of research subjects. When using the ideas of privacy, secrecy, and anonymity in research, researchers must always take into account what is best for the participants who make the research feasible in addition to what is best for their own research.

An IRB protocol application must describe each of these procedures. All research must ensure that participants' rights are protected to the highest standard, and this should be the top priority for all investigators when developing a study protocol. Please contact us if there is anything you would like us to add.

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