Hereditary Cancer Risk & Wellbeing

Overview
This study is aimed at exploring the psychological and social wellbeing of people with a high risk of hereditary cancer. This research is being conducted by members of UCD School of Psychology and St. Vincent’s University Hospital. It is supported by funding from the Irish Cancer Society and the Irish Research Council.

Research Focus
In this study, we measured psychosocial distress using questionnaires and are also investigating the influence of early experiences on psychosocial wellbeing. The study aimed to gather information from people who had experienced childhood adversity and those who had not. Additionally, the study aims to identify the psychosocial supports that people at high risk of cancer would have liked to have available. The research explores the complex relationship between the risk of hereditary cancer and psychosocial wellbeing, recognising that living with an increased risk of cancer due to hereditary factors can be a profound emotional and psychological experience, impacting people’s emotional well-being and their quality of life.

The Importance of This Study
By examining the specific psychological and social challenges and needs of those at high risk for hereditary cancer, this study aims to elucidate the unique psychological landscape of this population. We also aim to learn more about how potentially traumatic early life events may affect the psychosocial wellbeing and needs of this group. Our goal is to uncover the underlying factors that may contribute to psychosocial distress and to identify potential protective factors that can foster resilience and improve wellbeing.

Study Participation
This study is no longer recruiting participants. We previously invited adults in Ireland who are at an increased risk of hereditary cancer to take part through online questionnaires taking approximately 30 minutes to complete. The aim was to explore the psychological and social experiences of these people, offering insights into how their increased cancer risk intersects with emotional wellbeing.

Eligible participants were:

over the age of 18
resident in the Republic of Ireland,
understood English well,
hada high risk of cancer identified through genetic alteration (e.g. BRCA1/2, MLH1, MSH2 etc.) or family history
and did not currently have a cancer diagnosis (those with a previous cancer diagnosis could participate if currently cancer-free)

Potential Impact
This research has the potential to contribute to the body of knowledge around hereditary cancer risk and to influence the development of psychological interventions and public health strategies in Ireland for people with a high risk of hereditary cancer. The study aims to improve the emotional wellbeing and quality of life of this population by understanding the role of adverse childhood experiences and contributing to the development of targeted, trauma-informed care strategies. The findings could shape public health policies to be more sensitive and responsive to the needs of people at high cancer risk, especially considering potential past experiences of trauma (e.g. cancer-related death of family members).

Confidentiality and Ethical Considerations
Participant privacy and confidentiality are of utmost importance in this study. The research team is committed to making sure that the information we collect stays private and secure. Data collected through online psychological questionnaires will be anonymised. All data collected will be treated with the highest level of confidentiality and used solely for the purpose of not-for-profit health research.

FAQs

Q1: What is meant by “high hereditary cancer risk”?

A1: High hereditary cancer risk refers to a substantially increased likelihood of developing cancer, which can be due to inherited genetic alterations, strong family history patterns, or both. Some of the key genetic alterations include BRCA1 and BRCA2 genes in Hereditary Breast and Ovarian Cancer syndrome (HBOC), increasing risk for breast and ovarian cancers. Lynch Syndrome (or hereditary nonpolyposis colorectal cancer (HNPCC)), involving genes like MLH1 and MSH2, increases the risk of colorectal (bowel) cancer. Familial Adenomatous Polyposis, linked to the APC gene, is associated with a high risk of colorectal (bowel) cancer. Other relevant syndromes and conditions include Li-Fraumeni syndrome, Multiple Endocrine Neoplasia Types 1 and 2, Peutz-Jeghers syndrome, Hereditary Pancreatitis, Hereditary Diffuse Gastric Cancer, Von Hippel-Lindau syndrome, Cowden syndrome, Xeroderma Pigmentosum, and Familial Melanoma, each contributing to increased risks of various cancers.

Q2: Did participants need to have a genetic alteration like BRCA1 or BRCA2 to take part in this study?

A2: No, participants did not need to have a confirmed genetic alteration like BRCA1 or BRCA2 to participate in our study. While specific genetic alterations are a clear indicator of increased cancer risk, we also included individuals who were considered at high risk due to having multiple first-degree relatives with cancers that have known hereditary risk factors, or other strong family history indications. This approach helped us understand and address the psychosocial needs of individuals who may not have had a confirmed genetic alteration but were still at a high risk of developing cancer due to familial risk.

Q3: Why are adverse childhood experiences (ACEs) included in this study? Are you trying to draw a link between having ACEs and an increased likelihood of hereditary cancer risks or genetic alterations?

A3: The inclusion of adverse childhood experiences (ACEs) in this study aims to understand how these experiences may impact the unmet psychosocial needs, such as depression, anxiety, and lack of social support, of individuals living with a higher genetic or familial risk of cancer. This is especially important for those with high genetic or familial risk of cancer who are unfortunately more than twice as likely than the general population to experience ACEs such as the loss of a parent before age 18, which can profoundly impact their psychosocial needs as adults. This focus aligns with the principles of trauma-informed care, which acknowledges that past trauma can impact a person’s wellbeing throughout their life.

It’s important to clarify that this study does not aim to draw a link between ACEs and the likelihood of having hereditary cancer risks or genetic alterations like BRCA alterations. Instead, by including ACEs in our research, we aim to determine whether people with these experiences have different psychosocial needs and preferred support options compared to those who do not have such backgrounds. This knowledge could help in creating a healthcare environment that is more supportive, and in developing comprehensive, tailored psychosocial care services to improve the wellbeing of all those who are at increased hereditary cancer risk, whether they have experienced trauma or not.

Some of the measures we took to protect the comfort and safety of participants included:

Opt-In Nature: The adverse childhood experiences section was entirely optional, and participants could freely skip this section while still continuing with the rest of the study.
Content Warning: We provided a content warning before this section, and participants could choose not to answer these questions while still completing the rest of the study.
Confidentiality: All information shared was strictly confidential.
Support Services: Information about relevant support services was provided for those who might find the questions upsetting or seek additional psychological support.

These elements were carefully integrated into the study’s design to respect participant agency and privacy while gathering valuable psychosocial insights as part of the study’s trauma-informed framework.

Q4: How will my identity and privacy be protected?

A4: To ensure the privacy of the information provided, all data collected via the online questionnaires will be held confidentially our research team and results from this study will not be shared in a way that could identify participants.

Learn More
If you have any questions or would like more information about this study, please contact:

Ms Elaine Lowry,
PhD Candidate,
UCD School of Psychology

Email: elaine.lowry@ucdconnect.ie

Please revisit this page to stay informed of the findings from this study directly from our research team.