"Sharenting"

In the age of social media, parents are sharing personal information about their children with the general public. Sharenting is “the phenomenon of sharing photographs, embarrassing stories and other personal information about one’s children online” (https://scholarship.law.ufl.edu/cgi/viewcontent.cgi?article=1796&context=facultypub). Parents might not realize the consequences of this disclosure. Let’s take a closer look at what happens when that disclosure is their children’s personal health information.

In America, we have strong traditions in regard to the rights of parents being the controlling force in the upbringing of their children. We also have a strong legal tradition that allows parents to determine their children’s best interest. But unfortunately parents are not always the best protectors of their children. This is especially true with disclosures online. There is an infinite effect with online information because of the ongoing rediscovery on the Internet and social media. Even when parents have good intentions they might not realize the harm they are doing when they share personal information about their children online. The outcome is that children have lost control of their digital footprint (https://scholarship.law.ufl.edu/cgi/viewcontent.cgi?article=1796&context=facultypub).

When it comes to personal health information, it is even more disturbing. This disclosure can come back to haunt children in later years. How does this happen? Even when people think their health information is protected, it is not always the case. For example, health information is shared with data brokers, insurance companies, law enforcement, and various governmental agencies. Your health information is not protected under HIPAA with these agencies (read the fine print when you sign these forms). Also, people unknowingly share their information with third-party sites. Now this is happening with DNA testing and what can be more personal than our DNA?

The popularity of discovering one’s ancestry has skyrocketed, but do people realize they have become part of open-source genealogy databases? In addition to discovering one’s ancestry, some people are choosing to work directly with companies who carry out genetic testing for determining a person’s risk for certain diseases such as Parkinson’s disease, Alzheimer’s, cancers, etc. You do not need a physician’s prescription; a simple saliva test kit is submitted, and the results are sent back directly to the customer. They can also test for genetic mutations. Parents are now bypassing pediatricians to have their children’s DNA tested, and at times this is done against the recommendations of the doctor (https://www.nytimes.com/2020/01/02/opinion/dna-test-privacy-children.html?nl=todaysheadlines&emc=edit_th_200103?campaign_id=2&instance_id=14881&segment_id=20009&user_id=2881cad8f09d5d04d1ada80303b1628d&regi_id=913205490103).

The problem with handling this information becomes twofold:  

1. The parents do not necessarily know how to manage the information without the advice of a physician or genetic counselor. This can result in anxiety and fears – some of which are not warranted. If it is determined that a child is at high risk for certain diseases and this information has been disclosed online by parents, the children may face negative reactions in school settings, with sports teams or with health insurance companies in their coverage. Teenagers undergoing these disclosures could face barriers in work settings, in various group activities or clubs. Finally, there have been cases of surprise paternity results.
2. The second problem is that DNA testing becomes public. The original intention is usually that people are seeking to be informed about their health, including their children’s. Here is a little background about the popular company, 23andMe. The name represents the fact that there are 23 pairs of chromosomes in the human cell. Anne Wojcicki, Linda Avey and Paul Cusenza founded this California-based company in 2006. The company’s current estimated worth is $2.5 billion. (https://pitchbook.com/news/articles/scoop-23andme-is-raising-up-to-300m). In addition to discovering your ancestry, 23andMe can also perform health testing to see which genetic diseases a person may be susceptible to. It is called a direct-to-customer genetic testing company because it bypasses the physician and gives test results directly to the customer. The company became FDA authorized to carry out testing for cancer risk. Without a prescription, customers can find out if they test positive or not for BRCA1 and BRCA2 (associated with higher risk for breast, ovarian, and prostate cancers). The company also tests the personal risks for other diseases such as Alzheimer’s disease, Parkinson’s disease, celiac disease and more (https://www.nytimes.com/2020/01/02/opinion/dna-test-privacy-children.html?nl=todaysheadlines&emc=edit_th_200103?campaign_id=2&instance_id=14881&segment_id=20009&user_id=2881cad8f09d5d04d1ada80303b1628d&regi_id=913205490103). The company claims that the genetic information remains anonymous and that individuals are protected against discrimination by employers and insurance company with the passage of the 2008 GINA (Genetic Information Nondiscrimination Act). However, the guidelines of this act do not pertain when applying for life, long-term care, or disability insurances. We also do not know how GINA holds up in practice since GINA has not been tested in the courts (https://customercare.23andme.com/hc/en-us/articles/202907860-What-is-GINA-and-could-my-genetic-data-make-it-hard-for-me-to-get-insurance-coverage-).

People do not understand the consequences when they start sharing genetic information about themselves and their family on a public website. Information does not always remain anonymous, and many times parents (in wanting to help their children) seek to learn even more about family genealogy and they submit DNA data with open-source databases, such as MyHeritage and GEDmatch. Children’s DNA results and other health tests are then shared with marketing firms, insurance companies and databases in the same manner in which other details about the products that we buy are shared. What will happen in the future with these children when applying to college, seeking a job, purchasing health, life and other types of insurances, along with the many other events in their lives?
    
Children are losing their right to privacy, and ironically their parents are carrying out this exposure. When it comes to genetic testing, children are experiencing the added burden of learning about something they don’t have the maturity to handle. Although we have strong traditions about the parenting role in this country, shouldn’t children have the opportunity to learn more about their genetics only when and if they are interested?

Charlotte Michos is a clinical nurse specialist who values personal-centered care and serves as a Healthcare Consultant in helping others make informed decisions. For more information, email her or call (845) 548-5980.